Dup15q Alliance Resource Navigator provides resources for non-profit assistance, community support, funding resources, and information that may be beneficial to caregivers and family members affected by Dup15q Syndrome. The inclusion of links to other sites and organizations does not imply endorsement or support and is included for informational purposes only.
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Resources
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Equipment Financial Assistance
HERO: Healthcare Equipment Recycling Organization. We provide access to affordable medical equipment and supplies for all.
Equipment Financial Assistance
The My Gym Foundation is a registered 501(c)(3) nonprofit dedicated to helping children with disabilities and those struggling financially by awarding critically-needed gifts of equipment and services. Requests, limited to gifts of $500 or less, may include but are not limited to rehabilitative therapy, My Gym classes, assistive devices, medical equipment, and sensory items.
Equipment Financial Assistance
The M.O.R.G.A.N Project: We exist to provide families with specialized programs for children with special health care needs, disabilities, sensory issues and concerns, thus improving quality of life for the entire family. Located in East Central Florida, we serve families locally and nationwide through a host of quality-of-life programs.
Medical Financial Assistance
Mike's Kids: The purpose of this foundation is to provide assistance via services, equipment, education, special care and respite support to children with special needs and their families. Special need children include those who are physically and/or mentally challenged including those with learning disabilities. Additionally, educational materials/seminars will be sponsored for parents of special needs children relative to maximizing available resources and for medical providers in ways to prevent or minimize perinatal morbidity.
Equipment Financial Assistance
Mike's Kids: The purpose of this foundation is to provide assistance via services, equipment, education, special care and respite support to children with special needs and their families. Special need children include those who are physically and/or mentally challenged including those with learning disabilities. Additionally, educational materials/seminars will be sponsored for parents of special needs children relative to maximizing available resources and for medical providers in ways to prevent or minimize perinatal morbidity.
Equipment Financial Assistance
McLindon Family Foundation (MFF) mission is to provide adaptive bikes to children with special needs so that they can build critical core strength, boost confidence and nurture
friendships, all of which help these children maximize their potential and participation in society.
Medical Financial Assistance
Lindsay Foundation: Assists families with resources necessary to provide medical treatment, therapies and rehabilitative equipment in order to improve the quality of life for their special needs children.
Equipment Financial Assistance
Lindsay Foundation: Assists families with resources necessary to provide medical treatment, therapies and rehabilitative equipment in order to improve the quality of life for their special needs children.
Medical Financial Assistance
Angel's Hands Foundation:
Our mission is to improve the quality of life for individuals living with rare and undiagnosed medical conditions.
The primary purpose of Angel's Hands Foundation is to assist with medically related expenses, either not covered or partially covered, by insurance. AHF also assists with non-medically necessary equipment that has shown to improve the quality of life for individuals.
Equipment Financial Assistance
Angel's Hands Foundation:
Our mission is to improve the quality of life for individuals living with rare and undiagnosed medical conditions.
The primary purpose of Angel's Hands Foundation is to assist with medically related expenses, either not covered or partially covered, by insurance. AHF also assists with non-medically necessary equipment that has shown to improve the quality of life for individuals.
Equipment Financial Assistance
Friends of Man:
Works through Referring Professionals (caseworkers, case managers, healthcare workers, social workers, school counselors, teachers, clergy) who apply on behalf of their patients and clients needing mobility equipment, prosthetics, glasses, dentures, hearing aids, and much more!
General Financial Assistance
Friends of Man:
Works through Referring Professionals (caseworkers, case managers, healthcare workers, social workers, school counselors, teachers, clergy) who apply on behalf of their patients and clients needing mobility equipment, prosthetics, glasses, dentures, hearing aids, and much more!
Medical Financial Assistance
Astra Zeneca: provides financial assistance to eligible commercially insured patients that help reduce monthly cost of your medication. Commercial insurance is sometimes referred to as "private insurance" and is typically provided by the company you work for.
Perscription Financial Assistance
Astra Zeneca: Helps eligible uninsured and Medicare patients gain access to AstraZeneca medications.
AstraZeneca medicines provided at no cost. Click here to review the list of medicines available through this program.
Seizure Support Resources
The Epilepsy Learning Portal is your one-stop shop to access the Epilepsy Foundation's online and on-demand training classes about epilepsy and seizures. Here are some of their most popular classes. Feel free to browse their full class catalog.
Care Coordination
National Resource Center for Patient/Family-Centered Medical Home: a national technical assistance center focused on improving the health and well-being of, and strengthening the system of services for, children and youth with special health care needs and their families by enhancing the patient/family-centered medical home. A medical home is an approach to providing comprehensive primary care that facilitates partnerships between patients, clinicians, medical staff, and families. A medical home extends beyond the four walls of a clinical practice. It includes specialty care, educational services, family support and more.
Resource Directory
211 Information:
211 Information is a confidential service provided by United Way Worldwide. The service provides people with local information about human services for everyday needs such as food, housing, and health. This service also provides resources in times of crisis.
Wish Fulfillment
A Special Wish Foundation grants wishes for children and young adults between the ages of 3 and 21 who have been diagnosed with an advanced illness and live near Spokane, Washington. Wishes fall into three categories, including a special gift, a visit to a special place, or the opportunity to meet a special hero.
Financial Planning
ABLE Accounts:
Living with aq disability is often associated with significant amounts of extra costs. That's why individuals and families can now contribute to ABLE accounts - tax advantaged savings accounst that can fund disability expenses.
Future Planning
ABLE Accounts:
Living with aq disability is often associated with significant amounts of extra costs. That's why individuals and families can now contribute to ABLE accounts - tax advantaged savings accounst that can fund disability expenses.
Medical Travel Assistance
Medical Financial Assistance
Legal Assistance
Accessia Health Legal Assistance:
Advocating for Chronic Conditions, Entitlements and Social Services (ACCESS) is a free disability legal aid program, offered by Accessia Health, for families facing specific chronic medical conditions.
We are here to provide legal aid and representation when it's needed most. Assisting patients nationwide with disability legal aid, Social Security Disability (SSDI) claims, and Supplemental Security Income (SSI) claims.
Health Insurance Resources
Accessia Health:
We assist with the cost of patients' health insurance premiums. Whether you have private or public insurance, we are dedicated to supporting your health journey.
Adaptive Clothing
Easy Access Clothing: Adaptive clothing is clothing designed specifically for those who may have mobility or other issues and may not be able to use features such as buttons or zippers. While adaptive clothing for wheelchair users is the most popular type of adaptive clothing, there are also pieces for those with sensory issues, such as autism or related disorders.
Adult Clothing
Easy Access Clothing: Adaptive clothing is clothing designed specifically for those who may have mobility or other issues and may not be able to use features such as buttons or zippers. While adaptive clothing for wheelchair users is the most popular type of adaptive clothing, there are also pieces for those with sensory issues, such as autism or related disorders.
Adult Clothing
Adaptive Clothing Showroom provides clothing and accessories for men, women and children in need of regular or adaptive clothing to help ease the task of independent or aided dressing.
Adult Clothing
Adaptations By Adrian: We have been customizing individually made adaptive clothing for special needs. We strive to ease dressing challenges, of those working within physical limits, to help make daily lives more convenient and easier.
Adaptive Clothing
Adaptations By Adrian: We have been customizing individually made adaptive clothing for special needs. We strive to ease dressing challenges, of those working within physical limits, to help make daily lives more convenient and easier.
Adaptive Clothing
Adaptive Clothing Showroom provides clothing and accessories for men, women and children in need of regular or adaptive clothing to help ease the task of independent or aided dressing.
Adaptive Clothing
Adaptive Clothing by JCPenny:
JCPenney said its new private brand Thereabouts, which is being released this week, is designed to be an "inclusive line of kids apparel that celebrates the diversity of shapes, sizes, styles, and abilities." Sizes 2T - 22
The collection includes a line of adaptive clothing that's aimed at kids with sensory, dexterity, or mobility needs. The apparel has features like easy-access openings, sensory-friendly seaming, hidden abdominal access, and no tags, the retailer said.
Adult Clothing
Adaptive Clothing by JCPenny:
JCPenney said its new private brand Thereabouts, which is being released this week, is designed to be an "inclusive line of kids apparel that celebrates the diversity of shapes, sizes, styles, and abilities." Sizes 2T - 22
The collection includes a line of adaptive clothing that's aimed at kids with sensory, dexterity, or mobility needs. The apparel has features like easy-access openings, sensory-friendly seaming, hidden abdominal access, and no tags, the retailer said.
Adaptive Clothing
Adaptive Clothing by Target:
Target has expanded its clothing options for people with disabilities beyond children with a new collection of jeans and tops in adult sizes. Sensory-friendly and adaptive clothing for adults and children as part of a new line called Universal Thread that's meant to fit individuals of all shapes and sizes. Youth to Adult
Adult Clothing
Adaptive Clothing by Target:
Target has expanded its clothing options for people with disabilities beyond children with a new collection of jeans and tops in adult sizes. Sensory-friendly and adaptive clothing for adults and children as part of a new line called Universal Thread that's meant to fit individuals of all shapes and sizes. Youth to Adult
Adaptive Gear and Items
Adaptive Mall:
Adaptivemall.com offers the best selection of adaptive equipment for children with special needs. Our products range from special needs strollers to special needs car seats to adaptive toys for children's special needs therapy. At Adaptivemall.com, you'll find a variety of special needs products for your child's adaptive equipment needs. Our on-staff therapists and first-class customer service team are available to ensure your satisfaction with all special needs therapy products and special needs equipment
Adaptive Gear and Items
Adaptive Tech Solutions:
Adaptive Tech Solutions is a therapist owned and operated company and we strive to provide adapted equipment for individuals with disabilities at affordable prices. Adaptive Tech Solutions offers a complete line of affordable assistive technology devices and special needs products to help children and adults with disabilities.
Medical Air Travel Assistance
Air Care Alliance:
Free air transportation to medical treatment for people with a financial need is provided by many volunteer pilot organizations. You can easily find a public benefit flying group near you!
Medical Air Travel Assistance
Air Charity Network:
Air Charity Network is a charitable organization that provides access for people in need who are seeking free air transportation to specialized health care facilities or distant destinations due to family, community, or national crisis.
Genetic Testing
Ambit Care:
AmbitCare offers free genetic counseling and testing for patients with seizures and/or developmental delays.
Medical Travel Assistance
Angel Flight East:
The Mission of Angel Flight East: To provide free air transportation to qualified patients and their families by arranging flights to distant medical facilities, delivering supplies to disaster areas, and reuniting families during desperate times. Angel Flight East facilitates transportation in the Northeastern region of the United States for distances up to 1,000 miles. The minimum distance AFE travels is 100 miles. (See our Service Area Map) For flights longer than 1,000 miles or flights originating in other states, please visit the Air Care Alliance.
Medical Air Travel Assistance
Angel Flight:
Free air transportation for any charitable, medically related need.
Adaptive Swim
Aqua Jogger Belt:
AquaJogger Jr.'s learn to swim floatation belt does not inhibit arm strokes. It's designed to provide total freedom of movement so children can focus on the many skills involved in swimming. Supports up to 95 lbs.
Perscription Financial Assistance
Assistance Fund: The Assistance Fund provides various services, including education and financial aid, to help patients with chronic or serious illnesses cover the cost of FDA-approved medications. You can contact them directly at 855-845-3663.
General Financial Assistance
Aubrey Rose Foundation:
Helping families with financial need because of their children's medical expenses and more. We strive to lift families from life's complexities during this difficult time by providing emotional and financial support.
Adult Long-Term Supports
Autism Housing Network: Our vision is to become the largest database of user-generated resources and residential opportunities while fostering a supportive and encouraging online community. Your contributions, both financial and by AHN engagement, keep this community alive.
Future Planning
Autism Housing Network: Our vision is to become the largest database of user-generated resources and residential opportunities while fostering a supportive and encouraging online community. Your contributions, both financial and by AHN engagement, keep this community alive.
Housing Assistance
Autism Housing Network: Our vision is to become the largest database of user-generated resources and residential opportunities while fostering a supportive and encouraging online community. Your contributions, both financial and by AHN engagement, keep this community alive.
Genetic Testing
Behind the Seizure Program:
Sponsored, no-charge genetic testing for pediatric epilepsy
Medical Air Travel Assistance
Wandering Safety
Big Red Safety Toolkit: The National Autism Association's Big Read Safety Toolkit for caregivers seeks to prevent wandering and elopement. The tools and resources included in the kit provide direct aid and support to those at risk and their caregivers.
Adaptive Clothing
Billy Footwear:
Smashing fashion with function, BILLY Footwear incorporates zippers that go along the side of the shoes and around the toe, allowing the upper of each shoe to open and fold over completely. Thus the wearer can place his or her foot onto the shoe footbed unobstructed. Then with a tug on the zipper-pull the shoe closes and secures overtop the user's foot. It's simple. It's easy.
Adaptive Shoes
Billy Footwear:
Smashing fashion with function, BILLY Footwear incorporates zippers that go along the side of the shoes and around the toe, allowing the upper of each shoe to open and fold over completely. Thus the wearer can place his or her foot onto the shoe footbed unobstructed. Then with a tug on the zipper-pull the shoe closes and secures overtop the user's foot. It's simple. It's easy.
Adaptive Clothing
Busy Body Kids:
Compression clothing started by a Dup15q Family in honor of their busy body, CJ. The compression clothing helps children who are hyposensitive and crave constant input; they love jumping, bumping and crashing activities, as well as deep pressure such as that provided by tight bear hugs and squeezes. Busy Body compression clothing is functional yet stylish. These one of a kind designs were created so children can wear them as under-wear or also as outer-wear and can double as swimwear. Available in sizes child to youth.
Adaptive Swim
Seizure Response Dogs
Canine Assistants:
Canine Assistants teaches and provide seizure response dogs for recipients who have seizures. Following general education, seizure response dogs are taught to remain next to the person during the course of a seizure, summon help in a controlled environment, or retrieve a phone prior to the seizure when indicated by the recipient. Certain dogs may even develop the ability to predict and react in advance to an oncoming seizure once they are placed with their recipient.
Service Dog Financial Assistance
Canine Assistants:
Canine Assistants teaches and provide seizure response dogs for recipients who have seizures. Following general education, seizure response dogs are taught to remain next to the person during the course of a seizure, summon help in a controlled environment, or retrieve a phone prior to the seizure when indicated by the recipient. Certain dogs may even develop the ability to predict and react in advance to an oncoming seizure once they are placed with their recipient.
Travel Resources
Car Seats and Air Travel:
Did you know Every U.S. airline allows you to check a car seat free of charge when traveling with a child. You can check your car seat at the airport baggage counter or wait and check it at your gate.
Can I bring my car seat on board the plane? If you have a seat booked for your child and a car seat that is approved for use in aircraft by the FAA, then you can bring and use a car seat on board for your child.
Consider traveling with a more compact car seat models. Check out this list of the best car seats for air travel.
Car seats are obviously not allowed in exit rows (nor are any kids under age 15). But car seats are also not allowed in any seats where they would block the exit paths of others in the row. In a single-aisle plane with a 3-3 configuration, for example, this means that car seats are for the most part allowed only in the window seats. * Booster seats are not approved for use in planes by the FAA.
Medical Travel Assistance
CARES Child Aviation Restraint System:
CARES Child Aviation Restraint System is designed specifically for aviation use for children age 1 and older who weigh between 22 and 44 pounds. These youngsters are old enough to be in their own seats, but are too small for the seat belt alone to protect them and provide the safety they require during airplane travel. Their bodies cannot withstand the jolts that are common in routine air travel, much less emergency situations, and they flail forward or slide beneath the seat belt if they are not held securely in place
Travel Resources
CARES Child Aviation Restraint System:
CARES Child Aviation Restraint System is designed specifically for aviation use for children age 1 and older who weigh between 22 and 44 pounds. These youngsters are old enough to be in their own seats, but are too small for the seat belt alone to protect them and provide the safety they require during airplane travel. Their bodies cannot withstand the jolts that are common in routine air travel, much less emergency situations, and they flail forward or slide beneath the seat belt if they are not held securely in place
General Family Support
Caring for Yourself and Your Children
This toolkit is designed as a guide for parents who live with a rare disease. In addition to recognizing the emotional impact of being both a caregiver and a patient, this toolkit provides guidance to parents on the practical elements of living with a rare disease, such as employment, insurance, applying for social benefits, and everyday health management. Within this resource, you'll read tips and advice from other rare parents who spoke of their experiences and approaches in a "Parenting while RARE" session at the 2022 Global Genes Patient Advocacy Summit.
International Financial Assistance
Cerner Charitable Foundation:
Sometimes, financial constraints make it impossible for parents and caregivers to cover their child's medical expenses. Cerner Charitable Foundation accepts individual medical grant applications for medical needs from the United States and through select international providers. Expenses Covered: Treatment: Clinical procedures, medicine, therapy, prosthesis, etc., Equipment: Wheelchairs, assistive technology equipment, care devices, hearing aids, etc., Displacement: Lodging (only if charitable housing is unavailable), gas ($0.33 per mile), parking and transportation related to a child's care, Vehicle modifications: Lifts, ramps and transfer boards. Request Funding | Cerner Charitable Foundation
Medical Financial Assistance
Cerner Charitable Foundation:
Sometimes, financial constraints make it impossible for parents and caregivers to cover their child's medical expenses. Cerner Charitable Foundation accepts individual medical grant applications for medical needs from the United States and through select international providers. Expenses Covered: Treatment: Clinical procedures, medicine, therapy, prosthesis, etc., Equipment: Wheelchairs, assistive technology equipment, care devices, hearing aids, etc., Displacement: Lodging (only if charitable housing is unavailable), gas ($0.33 per mile), parking and transportation related to a child's care, Vehicle modifications: Lifts, ramps and transfer boards. Request Funding | Cerner Charitable Foundation
Equipment Financial Assistance
Chariots of Hope: world wide distribution of used wheelchairs, at no cost to recipients
International Financial Assistance
Chariots of Hope: world wide distribution of used wheelchairs, at no cost to recipients
Seizure Devices Financial Assistance
Chelsea Hutchison Foundation:
This Foundation provide grants for seizure-response dogs and epilepsy monitors for those in need, educate the public about SUDEP (Sudden Unexpected Death in Epilepsy), and provide support to those who have been affected by SUDEP.
Seizure Support Resources
Chelsea Hutchison Foundation:
This Foundation provide grants for seizure-response dogs and epilepsy monitors for those in need, educate the public about SUDEP (Sudden Unexpected Death in Epilepsy), and provide support to those who have been affected by SUDEP.
Service Dog Financial Assistance
Chelsea Hutchison Foundation:
This Foundation provide grants for seizure-response dogs and epilepsy monitors for those in need, educate the public about SUDEP (Sudden Unexpected Death in Epilepsy), and provide support to those who have been affected by SUDEP.
Seizure Support Resources
Child Neurologist New Visit Toolkit:
You can use the forms in this toolkit prior to your first visit with a neurologist or when visiting a new neurologist. We recommend you print this form out and bring it to the visit with you as well as keep an electronic or paper copy for yourself. It will be a valuable resource to track your child's journey and ensure the best quality of care. You can find the toolkit here.
Seizure Support Resources
Child Neurology Foundation Epilepsy Education Hub:
Healthy epilepsy management video series where each topic in this multi-part video series about healthy epilepsy management focuses on what we heard from partners and families in our community as a top priority. Some of the questions posed to our experts come directly from caregivers and parents who were given the chance to submit their questions prior to recording these videos.
Medical Air Travel Assistance
Children's Flight of Hope:
Providing air transportation for young patients and their families grants access to specialized medical care that might otherwise be out of reach, which in turn encourages faster and safer recoveries.
International Organizations
Children's Wish Foundation International grants wishes to children with advanced illness who are under the age of 18. Children under the age of three can participate in the organization's Young Minds program, which provides children younger than 4 or those with a cognitive age younger than 4, a gift from a variety of choices.
Wish Fulfillment
Children's Wish Foundation International grants wishes to children with advanced illness who are under the age of 18. Children under the age of three can participate in the organization's Young Minds program, which provides children younger than 4 or those with a cognitive age younger than 4, a gift from a variety of choices.
General Family Support
International Organizations
International Organizations
Chinese Organization for Rare Disorders:
Provides similar services as GARD only they will know more about the resources and medical specialists available in China. You may call 010-67500717 or visit their website for assistance.
Car Modification Financial Assistance
Home Modifications Financial Assistance
Medical Financial Assistance
Equipment Financial Assistance
Medical Financial Assistance
Care Coordination
CNF Care Coordination: care coordination means that everyone involved in caring for your child can effectively communicate and share updates, goals, and concerns so that your child's care can be maintained efficiently and effectively. Education and Resources
Crisis Support
Crisis Text Line:
Offers support for any crisis via text, 24 hours a day/7 days a week. You can text HOME to 741741 from anywhere in the United States, anytime. A live, trained Crisis Counselor receives the text and responds, all from a secure online platform.
Adaptive Beds
Cyr Designs, LLC:
The Courtney Bed is an alternative to a standard hospital bed and is hand-crafted from solid hardwood, there is no metal, PVC or any other material used in fabrication.
Seizure Support Resources
Seizure Devices Financial Assistance
Seizure Support Resources
Danny Did Resources:
The Danny Did Foundation is dedicated to its mission to prevent deaths caused by seizures.
Special Eduction Recreation Activity
Darby's Dancers:
Darby's Dancers is a 501(c)(3) organization dedicated to providing dance classes to children with special needs at no cost to their parents. With locations across the US, Darby's Dancers learn all types of dance in a fun, encouraging atmosphere. Dancers in the program gain confidence, coordination, strength and lifelong friends, all while feeling like a star. DD also provides volunteer opportunities for teens. Our youth volunteers learn important lessons in responsibility and friendship by providing one-on-one assistance to each of Darby's dancers.
Wish Fulfillment
Deliver the Dream:
Deliver the Dream provides families living with an advanced illness, whether the illness involves a child or a parent, the chance to enjoy a 3-day retreat.
Wish Fulfillment
Deliver the Dream:
Deliver the Dream provides families living with an advanced illness, whether the illness involves a child or a parent, the chance to enjoy a 3-day retreat.
Wish Fulfillment
Deliver the Dream:
Deliver the Dream provides families living with an advanced illness, whether the illness involves a child or a parent, the chance to enjoy a 3-day retreat."
Equipment Financial Assistance
Different Needz Foundation:
The Different Needz Foundation helps individuals with developmental disabilities obtain the necessary equipment and medical services they need to have the best quality of life. Grant applications are made available in January of each year with grant decisions announced to award recipients in May. The Foundation considers future needs and provides payment for medical services or equipment directly to the provider.
Medical Financial Assistance
Different Needz Foundation:
The Different Needz Foundation helps individuals with developmental disabilities obtain the necessary equipment and medical services they need to have the best quality of life. Grant applications are made available in January of each year with grant decisions announced to award recipients in May. The Foundation considers future needs and provides payment for medical services or equipment directly to the provider.
Equipment Financial Assistance
Digital Access Program: Bridging The Divide By Getting Families Online
Child Neurology Foundation is re-launching a program to give at least 50 families, with at least one child living with a neurologic condition, a refurbished Chromebook, and if applicable, a hotspot with 23GB of data a month for one year from acceptance.
Disability Advocacy
Disability Rights Legal Center (DRLC) is a 501C-3 non-profit, public interest advocacy organization that champions the civil rights of people with disabilities as well as those affected by cancer.
Legal Assistance
Disability Rights Legal Center (DRLC) is a 501C-3 non-profit, public interest advocacy organization that champions the civil rights of people with disabilities as well as those affected by cancer.
Resource Directory
Disabilty Resources
Governmental Advocacy/Internalional
Disabled Peoples' International is a network of national organizations or assemblies of disabled people, established to promote human rights of disabled people through full participation and the equalization of opportunity and development.
Seizure Support Resources
Drop Supports:
Drop Support harness is a unique, upper body harness that wraps around the user's waist, chest and torso, with an attached central handle running the length of the torso. The support handle is a point of contact between the user of the harness and the person assisting the user ("assistant").
Financial Planning
Dup15q Alliance Financial Planning: All parents worry about their children's futures. But for parents of children with dup15q syndrome, the worry can be even bigger. Mapping out your child's financial future can seem daunting but having a plan can help ease your fears. A special needs trust is a legal arrangement that allows a disabled or chronically ill person to have access to funds without reducing their eligibility for the public assistance disability benefits such as Supplemental Security Income, Medicare, or Medicaid. Dup15q Alliance is proud to announce we are partnering with Tyler and Maderer Law Firm to offer a specialized Help Ticket program for Special Needs Trusts
Future Planning
Dup15q Alliance Financial Planning: All parents worry about their children's futures. But for parents of children with dup15q syndrome, the worry can be even bigger. Mapping out your child's financial future can seem daunting but having a plan can help ease your fears. A special needs trust is a legal arrangement that allows a disabled or chronically ill person to have access to funds without reducing their eligibility for the public assistance disability benefits such as Supplemental Security Income, Medicare, or Medicaid. Dup15q Alliance is proud to announce we are partnering with Tyler and Maderer Law Firm to offer a specialized Help Ticket program for Special Needs Trusts
Financial Planning
Dup15q Alliance Financial Planning: All parents worry about their children's futures. But for parents of children with dup15q syndrome, the worry can be even bigger. Mapping out your child's financial future can seem daunting but having a plan can help ease your fears. Dup15q Alliance is proud to announce we are partnering with Tyler and Maderer Law Firm to offer a specialized Help Ticket program for Social Security
General Family Support
Easter Seals
Provides services and support for adults and children with special needs as well as help to their families.
Resource Directory
eParent Special Needs Resource Directory:
eParent Special Needs Resource Directory provides a comprehensive guide for parents and families of children with chronic health issues, disabilities and special needs, as well as to physicians, allied health care professionals and educational professionals who are involved in their care and development. This directory is designed to assist in your search for helpful information and resources for every situation.
Seizure Support Resources
Epilepsy & Seizures 24/7 Helpline
The Epilepsy Foundation offers a 24/7 Epilepsy & Seizures Helpline with trained information specialists available to answer your questions, provide support, and direct you to local or national resources. There are several convenient ways for you to reach the Helpline when you have a question. You can call 1-800-332-1000 to speak with someone in English, or you can call 1-866-748-8008 to speak to someone in Spanish. We answer calls 24 hours a day, 7 days a week
Seizure Support Resources
Epilepsy Centers
For many people living with epilepsy, regular visits to their neurologist are enough for treatment of their seizures. However, if your loved one has trouble controlling their seizures, an epilepsy center can provide special care that other doctors may not be able to provide. Epilepsy centers have experts in the diagnosis, evaluation, and treatment of epilepsy.
Sibling Support
Epilepsy Foundation Kids Crew:
At the Kids Crew, we want you to use your imagination and think creatively. We know kids have unique gifts that can be used to give back to others under the three areas on which we focus. We want you to take it upon yourself to come up with ideas that can impact your community based on what you have experienced. Doing so allows for teamwork, helps you learn more about epilepsy, and gives you confidence. Our belief is that you can use your talents to give back to others and to make a real difference. The program is free to join and is for kids ages 14 and under of all abilities. If you don't have epilepsy, we still want you to join. Often, siblings, friends, and relatives of those with epilepsy are the best advocates. We are looking for those who want to learn, spread awareness, and make a difference. And have fun, too!!
Seizure Support Resources
Epilepsy in the African American Community
Seizure Support Resources
Travel Resources
eSpecial Needs Car Seats & Seatbelt Guards:
Finding the right car seat for a special needs child can be a challenge with certain medical conditions or behavior problems that lead a child to repeatedly unbuckle a car seat's harness straps. All of our car seats comply with Federal Motor Vehicle Safety Standards that require all special needs car seats to meet FMVSS 213 for Child Restraint Systems.
Adaptive Gear and Items
eSpecial Needs Car Seats & Seatbelt Guards:
Finding the right car seat for a special needs child can be a challenge with certain medical conditions or behavior problems that lead a child to repeatedly unbuckle a car seat's harness straps. All of our car seats comply with Federal Motor Vehicle Safety Standards that require all special needs car seats to meet FMVSS 213 for Child Restraint Systems.
Adaptive Swim
eSpecial Needs:
There are a variety of special needs swimming products for children and adults with sensory processing disorders or developmental delays. You can find buoyancy belts, stabilizer bars, floating comfort mats, swim diapers, and more for different age groups. These items are specifically designed for special needs swimming classes and adaptive swim lessons. All are safe, durable, and designed to assist individuals with special needs.
International Organizations
Eurordis Rare disease help line:
Rare disease help lines offer social, psychological and information solutions to all of these needs. Contact the help line in your country to find out more information about therapeutic recreation, respite care and adapted housing.
Feeding Tube Assistance
Feeding Tube Awareness Foundation:
Provide free feeding g-tubes belts and pads to any child that requires one.
Adaptive Gear and Items
Medical Air Travel Assistance
Footprints In The Sky:
FOOTPRINTS IN THE SKY is a Denver-based 501(c)(3) non-profit corporation dedicated to providing FREE FLIGHTS for patients to medical facilities throughout the United States using mainly donated charter and corporate jets. Those who seek our help are typically in need of routine, critical or life-saving care and cannot use commercial airline service or other means of transportation because of financial constraints and medical issues.
Diapers Financial Assistance
FREE Diapers and Pull-Ups Through Medicaid for Children with Special Needs
While some children may be potty trained by the time they are three years old, others may struggle with urinary incontinence, or lack of bladder control, until they are older. Children covered by Medicaid may be able to receive diapers, pull-ups, and other incontinence supplies at no cost through their Medicaid benefits. CHECK YOUR CHILD'S ELIGIBILITY >
Diapers Financial Assistance
FREE Diapers and Pull-Ups Through Medicaid for Children with Special Needs:
While some children may be potty trained by the time they are three years old, others may struggle with urinary incontinence, or lack of bladder control, until they are older. Children covered by Medicaid may be able to receive diapers, pull-ups, and other incontinence supplies at no cost through their Medicaid benefits.
International Organizations
Genetic Alliance UK, Rare Disease UK, & SWAN:
Provides similar services as GARD only this alliance of three organization will know more about the resources and medical specialists available in the United Kingdom. SWAN is focused on supporting those who are undiagnosed. You may call 0300 124 0441or visit their website for assistance.
International Organizations
Genetic and Rare Disease Information Specialists: Patients, family members, and caregivers may contact GARD by phone or our contact form. Our Information Specialists provide personalized responses that are easy to understand, free of charge, and confidential.
GARD Information Specialists can help find information about: Rare diseases, Finding specialists, Patient organizations, Organizations that may provide financial, disability, or travel support, Clinical studies, International rare disease organizations, Support for caregivers, Resources for people who suspect they have an undiagnosed rare disease
International Organizations
German Alliance for Rare Diseases (Allianz Chronischer Seltener Erkrankungen):
Provides similar services as GARD only they will know more about the resources and medical specialists available in Germany. You may call +49-30-3300708-0 or visit their website for assistance.
Wish Fulfillment
Give Kids the World: Give Kids the World is a nonprofit resort in Central Florida that provides weeklong, cost-free vacations to children with life-threatening illnesses and their families. A child must be sponsored by one of more than 250 wish-granting organizations in the country or a children's hospital affiliated with Give Kids the World.
Equipment Financial Assistance
Giving Angels Foundation:
Enhance the daily functioning of a child with special needs from a low income family by awarding grants for essential therapies*, life-changing equipment, essential family bills and specialized camps.
General Financial Assistance
Giving Angels Foundation:
Enhance the daily functioning of a child with special needs from a low income family by awarding grants for essential therapies*, life-changing equipment, essential family bills and specialized camps.
Medical Financial Assistance
Giving Angels Foundation:
Enhance the daily functioning of a child with special needs from a low income family by awarding grants for essential therapies*, life-changing equipment, essential family bills and specialized camps.
Financial Assistance
Giving Angels Foundation:
Our mission is to enhance the daily functioning of a child with a physical disability from a lower income family by awarding grants for life-changing equipment, medical supplies, essential family bills, specialized camps, and therapeutic toys. We classify special needs as those children under the age of 21 with any type of physical disability. $500 maximum one-time grant allowance per recipient family. $50,000 maximum annual income threshold. For more information, click here.
General Family Support
Genetic Counseling
Resource Directory
Medical Financial Assistance
Perscription Financial Assistance
Medical Financial Assistance
Good Rx:
Prescription drug prices are not regulated. The cost of a prescription may differ by more than $100 between pharmacies across the street from each other! Insurance isn't helping like it used to. In the past 10 years, insurance companies have passed 25-80% more of the cost of drugs onto patients. GoodRx gathers current prices and discounts to help you find the lowest-cost pharmacy for your prescriptions. The average GoodRx customer saves $276 a year on their prescriptions. GoodRx is 100% free. No personal information is required.
Perscription Financial Assistance
Good Rx:
Prescription drug prices are not regulated. The cost of a prescription may differ by more than $100 between pharmacies across the street from each other! Insurance isn't helping like it used to. In the past 10 years, insurance companies have passed 25-80% more of the cost of drugs onto patients. GoodRx gathers current prices and discounts to help you find the lowest-cost pharmacy for your prescriptions. The average GoodRx customer saves $276 a year on their prescriptions. GoodRx is 100% free. No personal information is required.
General Financial Assistance
Medical Financial Assistance
Perscription Financial Assistance
Heathwell Foundation:
The HealthWell Foundation is a leading non-profit dedicated to improving access to care for America's underinsured. When health insurance is not enough, we fill the gap by assisting with copays, premiums, deductibles and out-of-pocket expenses. Provide financial assistance to help with: Prescription copays, Health insurance premiums, deductibles and coinsurance, Pediatric treatment costs, and travel costs.
Medical Financial Assistance
Heathwell Foundation:
The HealthWell Foundation is a leading non-profit dedicated to improving access to care for America's underinsured. When health insurance is not enough, we fill the gap by assisting with copays, premiums, deductibles and out-of-pocket expenses. Provide financial assistance to help with: Prescription copays, Health insurance premiums, deductibles and coinsurance, Pediatric treatment costs, and travel costs.
Medical Travel Financial Assistance
Heathwell Foundation:
The HealthWell Foundation is a leading non-profit dedicated to improving access to care for America's underinsured. When health insurance is not enough, we fill the gap by assisting with copays, premiums, deductibles and out-of-pocket expenses. Provide financial assistance to help with: Prescription copays, Health insurance premiums, deductibles and coinsurance, Pediatric treatment costs, and travel costs.
General Family Support
Hope Kids
We focus on five research-driven impact areas to ease the journey for families who are walking through the hardest time in their lives: hope and anticipation, family focus, community and support, safety and acceptance, economic support.
Wish Fulfillment
Hope Kids:
Hope Kids hosts regular events and activities that help restore hope for the future. Hope Kids also provides a support community for children with advanced illnesses and their families.
Health Insurance Resources
How to Make Your Health Insurance Work for You:
Now that you are all signed up for your insurance plan, learn how to navigate it! NORD hosted a webinar to aid rare disease patients and caregivers in learning how to make their health insurance work for them. The webinar recording here covers how insurance works, an overview on the approval process and tips on how to successfully reverse a denial. To learn more, click here.
Special Needs Dental Care
Humanitarian Foundation: The Grottoes of North America Humanitarian Foundation is a 501 (c) (3) nonprofit organization that brings "Special Smiles" to children with special needs by providing them much-needed dental care.
Genetic Testing
iHope: The iHope Program is a philanthropic initiative launched by Illumina to make clinical whole-genome sequencing (cWGS) accessible to underserved children facing rare and undiagnosed genetic diseases (RUGD). It operates through the Illumina Clinical Services Laboratory (ICSL) in San Diego, California.
International Organizations
Indian Organization for Rare Diseases:
Provides similar services as GARD only they will know more about the resources and medical specialists available in India. You may call +91-9666438880 or visit their website for assistance.
Medical Waivers
Insurance Guide: A State-by-State Resource for Insurance and Waiver Support
Our friends at Angelman Syndrome Foundation have put together a comprehensive guide to help families navigate the insurance process in their state. Each state has various options of Medicaid and Waivers, which can seem overwhelming and difficult. Our hope is that you find this guide useful and helpful as you try to advocate for your individual with Angelman syndrome. Please note that Waiver wait times, websites, personal and funding can change regularly depending on the state and the agency that oversees Medicaid and various programs.
Medical Financial Assistance
Insurance Guide: A State-by-State Resource for Insurance and Waiver Support
Our friends at Angelman Syndrome Foundation have put together a comprehensive guide to help families navigate the insurance process in their state. Each state has various options of Medicaid and Waivers, which can seem overwhelming and difficult. Our hope is that you find this guide useful and helpful as you try to advocate for your individual with Angelman syndrome. Please note that Waiver wait times, websites, personal and funding can change regularly depending on the state and the agency that oversees Medicaid and various programs.
Health Insurance Resources
Insurance Guide: A State-by-State Resource for Insurance and Waiver Support
Our friends at Angelman Syndrome Foundation have put together a comprehensive guide to help families navigate the insurance process in their state. Each state has various options of Medicaid and Waivers, which can seem overwhelming and difficult. Our hope is that you find this guide useful and helpful as you try to advocate for your individual with Angelman syndrome. Please note that Waiver wait times, websites, personal and funding can change regularly depending on the state and the agency that oversees Medicaid and various programs.
Medical Waivers
Insurance Guide: A State-by-State Resource for Insurance and Waiver Support
Our friends at Angelman Syndrome Foundation have put together a comprehensive guide to help families navigate the insurance process in their state. Each state has various options of Medicaid and Waivers, which can seem overwhelming and difficult. Our hope is that you find this guide useful and helpful as you try to advocate for your individual with Angelman syndrome. Please note that Waiver wait times, websites, personal and funding can change regularly depending on the state and the agency that oversees Medicaid and various programs.
International Organizations
Italian Federation for Rare Diseases (Federazione Italiana Malattie Rare):
Provides similar services as GARD only they will know more about the resources and medical specialists available in Italy. You may call 06 4404773 or visit their website for assistance.
Wish Fulfillment
Jason's Dream:
Jason's Dream for Kids grants wishes to children diagnosed with advanced disease living in New Jersey. The organization relies on medical professionals and parents for referrals and determines medical eligibility by speaking with the health care team.
Medical Financial Assistance
Josh Provides Epilepsy Assistance Foundation
Program provides financial assistance to individuals affected by epilepsy or other seizure disorders. Financial assistance for medical services, seizure alert and detection devices, seizure response dogs, and transportation and travel.
Seizure Devices Financial Assistance
Josh Provides Epilepsy Assistance Foundation
Program provides financial assistance to individuals affected by epilepsy or other seizure disorders. Financial assistance for medical services, seizure alert and detection devices, seizure response dogs, and transportation and travel.
Service Dog Financial Assistance
Josh Provides Epilepsy Assistance Foundation
Program provides financial assistance to individuals affected by epilepsy or other seizure disorders. Financial assistance for medical services, seizure alert and detection devices, seizure response dogs, and transportation and travel.
Adaptive Clothing
Jumpin Jammerz:
Youth to Adult Adult size footed pajamas.
Adult Clothing
Jumpin Jammerz:
Youth to Adult Adult size footed pajamas.
Seizure Response Dogs
K94Life:
Service Dogs provide greater independence, joy, fulfillment, confidence, security, and love. Our service dogs are trained to help individuals who have a wide range of disabilities. CPL trains service dogs to assist individuals who have mobility impairments, balance disorders, difficulty using their hands/arms, health-related fatigue issues, people with seizure/cardiac syncope and diabetes/ blood pressure disorders.
Service Dogs
K94Life:
Service Dogs provide greater independence, joy, fulfillment, confidence, security, and love. Our service dogs are trained to help individuals who have a wide range of disabilities. CPL trains service dogs to assist individuals who have mobility impairments, balance disorders, difficulty using their hands/arms, health-related fatigue issues, people with seizure/cardiac syncope and diabetes/ blood pressure disorders.
General Financial Assistance
Keep Swimming Foundation:
Keep Swimming Foundation is a nonprofit organization that provides financial relief to families of critically ill patients who require extended inpatient medical care at an accredited USA hospital. While health insurance provides support for medical costs, families faced with extended inpatient care typically shoulder the burden of the external costs associated with visiting and caring for their loved one. Because of this need, Keep Swimming Foundation was born. Expenses Covered: Hotel Rooms, Bedside Meals, Parking, Public Transportation, Gasoline, Rent and Mortgage Payments.
General Financial Assistance
General Financial Assistance
Kelly Anne Dolan Memorial Fund
Children being referred for assistance must reside or be treated in Pennsylvania, New Jersey, or Delaware. Families may not apply to the Fund directly. Referrals must be made by a healthcare professional (for example, a social worker, case manager, nurse, doctor, or therapist). Kelly Anne Dolan Memorial Fund provides assistance with expenses not covered by insurance, such as:
Utility and phone bills
Mortgage/Rent
Car payments
Transportation costs
Disability needs
Air conditioners for children with severe pulmonary, cardiac, skin, liver, and kidney diseases
Medically necessary dietary supplements, special foods, and formulas
Co-pays
Child care
Funeral expenses
Medical Financial Assistance
Kelly Anne Dolan Memorial Fund
Children being referred for assistance must reside or be treated in Pennsylvania, New Jersey, or Delaware. Families may not apply to the Fund directly. Referrals must be made by a healthcare professional (for example, a social worker, case manager, nurse, doctor, or therapist). Kelly Anne Dolan Memorial Fund provides assistance with expenses not covered by insurance, such as:
Utility and phone bills
Mortgage/Rent
Car payments
Transportation costs
Disability needs
Air conditioners for children with severe pulmonary, cardiac, skin, liver, and kidney diseases
Medically necessary dietary supplements, special foods, and formulas
Co-pays
Child care
Funeral expenses
Medical Travel Financial Assistance
Kelly Anne Dolan Memorial Fund
Children being referred for assistance must reside or be treated in Pennsylvania, New Jersey, or Delaware. Families may not apply to the Fund directly. Referrals must be made by a healthcare professional (for example, a social worker, case manager, nurse, doctor, or therapist). Kelly Anne Dolan Memorial Fund provides assistance with expenses not covered by insurance, such as:
Utility and phone bills
Mortgage/Rent
Car payments
Transportation costs
Disability needs
Air conditioners for children with severe pulmonary, cardiac, skin, liver, and kidney diseases
Medically necessary dietary supplements, special foods, and formulas
Co-pays
Child care
Funeral expenses
Medical Financial Assistance
Kiddos Clubhouse Foundation:
Kiddos Clubhouse Foundations mission is to better shape lives for children with special needs. Kiddos' Clubhouse Foundation provides therapy scholarships to help families pay for critical therapies. Through partnerships and generous support from corporate and private donors, grants, and charitable events, we are able to relieve financial burdens and help families regain hope for their children.
Medical Financial Assistance
Kiddos' Clubhouse Foundation
Kiddos' Clubhouse Foundation works to make sure children with emotional and developmental challenges get access to therapies that they need. Funds are raised through charitable events, donations, and grants and offered directly to recipients.
Medical Financial Assistance
Kiddos' Clubhouse Foundation:
Kiddos' Clubhouse Foundation provides therapy scholarships to help families pay for critical therapies. Through partnerships and generous support from corporate and private donors, grants, and charitable events, we are able to relieve financial burdens and help families regain hope for their children.
Equipment Financial Assistance
Kids Mobility Network:
Kids Mobility Network is a 501(c)3 non-profit organization providing children with disabilities with complex rehab technology and durable medical equipment such as wheelchairs, walkers and other medical equipment. We operate our organization with caring and integrity.
Equipment Financial Assistance
Kids Mobility Network:
Kids Mobility Network is a 501(c)3 non-profit organization providing children with disabilities with durable medical equipment such as wheelchairs, walkers and other medical equipment.
Medical Waivers
Kids Waivers:
Kids' Waivers is a compilation of information about Medicaid waivers, Katie Beckett or TEFRA programs, and other programs for children with disabilities or medical needs. This website is the product of years of ongoing research on these programs. To learn more about specific programs, you can compare states and obtain basic information using our sortable full list of programs. We also have more detailed pages for each state, which can be accessed by clickable map or text links. Please note that Kids' Waivers does not operate any of these waiver programs, and we cannot place your child in a program, verify your child's application, or verify any details about your child's current program. We can only point you toward the programs that are available in your state.
Medical Financial Assistance
Kids Waivers:
Kids' Waivers is a compilation of information about Medicaid waivers, Katie Beckett or TEFRA programs, and other programs for children with disabilities or medical needs. This website is the product of years of ongoing research on these programs. To learn more about specific programs, you can compare states and obtain basic information using our sortable full list of programs. We also have more detailed pages for each state, which can be accessed by clickable map or text links. Please note that Kids' Waivers does not operate any of these waiver programs, and we cannot place your child in a program, verify your child's application, or verify any details about your child's current program. We can only point you toward the programs that are available in your state.
Medical Waivers
Kids Waivers:
Kids' Waivers is a compilation of information about Medicaid waivers, Katie Beckett or TEFRA programs, and other programs for children with disabilities or medical needs. This website is the product of years of ongoing research on these programs. To learn more about specific programs, you can compare states and obtain basic information using our sortable full list of programs. We also have more detailed pages for each state, which can be accessed by clickable map or text links. Please note that Kids' Waivers does not operate any of these waiver programs, and we cannot place your child in a program, verify your child's application, or verify any details about your child's current program. We can only point you toward the programs that are available in your state.
Wish Fulfillment
Kids Wish Network:
Kids Wish Network grants wishes for children who are between the ages of 3 and 18 and have a life-threatening medical condition. Anyone can refer a child, including a family member, friend, nurse, doctor, or social worker.
General Financial Assistance
KNOW Autism:
The Tuition & Therapy Assistance Program offers scholarships ranging from $1,000 to $5,000 to help ease the financial burden of therapeutic treatments and intervention for autism. To be eligible, the child must be between the ages of 12 months and 18 years of age and must have already received a clinical diagnosis of Autism Spectrum Disorder. These awards may be used for behavioral intervention programs, occupational therapy, speech therapy, social skills groups, special needs schools, and/or special education programs.
Wish Fulfillment
KultureCity:
Making the nevers possible. We are the nation's leading nonprofit on sensory accessibility and acceptance for those with invisible disabilities.
Equipment Financial Assistance
Kya's Krusade: Provides funding for adaptive equipment or therapy not covered by insurance for families with children with special needs.
Medical Financial Assistance
Kya's Krusade: Provides funding for adaptive equipment or therapy not covered by insurance for families with children with special needs.
Life Services helps families plan for the time when they will no longer be here to care for their loved-one and provides direct services to disabled people whose families have left assets for their care.
Medical Air Travel Assistance
LifeLine Pilots:
LifeLine Pilots facilitates FREE transportation for such medical needs as on-going medical treatments, diagnosis and follow-up care.
Adaptive Clothing
Little Keeper Sleepers:
A sleeper that is easy for caregivers to get on and off, but not one the children can get out of. Children stay warm at night and ensure no mess to clean in their beds in the middle of the night or come morning. Size 18 months to size 20
Adult Clothing
Little Keeper Sleepers:
A sleeper that is easy for caregivers to get on and off, but not one the children can get out of. Children stay warm at night and ensure no mess to clean in their beds in the middle of the night or come morning. Size 18 months to size 20
General Financial Assistance
Maggie Welby Foundation:
The Maggie Welby Foundation offers grants for children and families that have a financial need for a particular purpose. Grants may extend to children and families in need of help with bills, athletic opportunities, medical needs, or an opportunity that a child would not otherwise have.
Medical Financial Assistance
Maggie Welby Foundation:
The Maggie Welby Foundation offers grants for children and families that have a financial need for a particular purpose. Grants may extend to children and families in need of help with bills, athletic opportunities, medical needs, or an opportunity that a child would not otherwise have.
Equipment Financial Assistance
Wish Fulfillment
Make A Wish Foundation: Make-A-Wish has granted hundreds of thousands of life-changing wishes to children battling critical illnesses.
Wish Fulfillment
Equipment Financial Assistance
McLindon Family Foundation: Provides adaptive bikes to families of children with special needs.
Perscription Financial Assistance
Medicine Assistance Tool:
PhRMA's Medicine Assistance Tool (MAT is a search engine designed to help patients, caregivers and health care providers learn more about the resources available through the various biopharmaceutical industry programs. MAT is not its own patient assistance program, but rather a search engine for many of the patient assistance resources that the biopharmaceutical industry offers.)
Medical Travel Assistance
Mercy Medical Angels:
Mercy Medical Angels provides FREE transportation nationwide to and from medical care on the ground with gas cards, bus and train tickets and in the air through commercial airlines and volunteer pilots.
Medical Air Travel Assistance
Miracle Flights:
Miracle Flights provides children and their families free flights to distant, specialized care and valuable second opinions.
General Financial Assistance
Modest Needs:
Grants and financial assistance for families managing health crisis.
Respite Resources
Mother's Rest Respite Retreat
At A Mother's Rest, we believe that frequent, affordable respite is a key factor in keeping special needs parents and caregivers healthy. Ensuring the best care of disabled children and adults means ensuring the best care for their parents.
Equipment Financial Assistance
My Gym Challenged America: (MGCA) accepts applications from or on behalf of children with physical, cognitive or developmental disabilities and those coping with chronic illness. Requests, limited to gifts of $500 or less, may include but are not limited to: rehabilitative therapy, assistive devices, medical equipment and sensory items.
International Organizations
Nadir Hastaliklar AGI:
As the people who have rare diseases and their relatives, we united for the purpose of drawing attention to these unknown lifes in Turkey and the world. Furthermore, to generate practical, rational and, permanent solutions to this issur and apply them into real life.
Each disease has its own speciality. As a result, special care, therapeutiv approaches, medications, consumables, speciak nutriens and medical equipment are required. Due to this reason, our aim is to create a base for legal legislation, increase treatment opportunities and provide benefit for newly diagnosed individuals by proposing our suggested solutions via cooperating with health authorities.
Disability Employment Resources
National Organization on Disability:
The National Organization on Disability (NOD) increases employment opportunities for Americans with disabilities. Our programs and services enable companies to realize the competitive advantages of hiring people with disabilities.
Financial Assistance
Navigators:
Your hospital or provider might be able to provide access to financial navigators who are trained to provide guidance and direction toward resources to reduce the costs of care and medications. Ask your provider if they can put you in contact with a financial navigator.
Medical Travel Financial Assistance
Needy Meds:
Needy Meds is a nonprofit organization that lists programs that help people who cannot afford medications and healthcare costs. NeedyMeds has information about government programs, low-cost or free medical and dental clinics, and prescription assistance. NeedyMeds also has disease-specific financial aid programs. You can contact them directly at 800-503-6897.
Perscription Financial Assistance
Needy Meds:
Needy Meds is a nonprofit organization that lists programs that help people who cannot afford medications and healthcare costs. NeedyMeds has information about government programs, low-cost or free medical and dental clinics, and prescription assistance. NeedyMeds also has disease-specific financial aid programs. You can contact them directly at 800-503-6897.
Medical Financial Assistance
Needy Meds:
Needy Meds is a nonprofit organization that lists programs that help people who cannot afford medications and healthcare costs. NeedyMeds has information about government programs, low-cost or free medical and dental clinics, and prescription assistance. NeedyMeds also has disease-specific financial aid programs. You can contact them directly at 800-503-6897.
Medical Financial Assistance
Needy Meds: Needy Meds is a nonprofit organization that lists programs that help people who cannot afford medications and healthcare costs. NeedyMeds has information about government programs, low-cost or free medical and dental clinics, and prescription assistance. NeedyMeds also has disease-specific financial aid programs.
Perscription Financial Assistance
Needy Meds: Needy Meds is a nonprofit organization that lists programs that help people who cannot afford medications and healthcare costs. NeedyMeds has information about government programs, low-cost or free medical and dental clinics, and prescription assistance. NeedyMeds also has disease-specific financial aid programs.
Seizure Support Resources
Neurotech EEG - In-Home EEG
Information on in-home EEG services.
Disability Advocacy
New Horizons Un-Limited provides access to informational and technological tools to ensure that people with disabilities may have access to all that life has to offer. New Horizons Un-Limited is a non-profit disability advocacy organization that provides our disabled community members the information, tools and experiences that encourage lifelong learning and service so that we may all work together to create a more inclusive, accepting society.
Medical Financial Assistance
NiceRX: NiceRx assists eligible individuals access over 1,500 FDA-approved prescription medications, via manufacturer approved patient assistance programs (PAP), for a set price of $49.00 per month for each medication we are able to assist with. There are no upfront costs or hidden fees.
Perscription Financial Assistance
NiceRX: NiceRx assists eligible individuals access over 1,500 FDA-approved prescription medications, via manufacturer approved patient assistance programs (PAP), for a set price of $49.00 per month for each medication we are able to assist with. There are no upfront costs or hidden fees.
Health Insurance Resources
Respite Resources
NORD Offers Program Aimed at Providing Caregivers with Relief
The Respite Program provides financial assistance to enable the caregiver a break to attend a conference, event or simply have an afternoon or evening away from caregiving. Financial assistance will be granted up to $800 annually for those who qualify.
Medical Financial Assistance
NORD Rare Care Assistance Program:
Since 1987, NORD has provided assistance programs to help patients obtain life-saving or life-sustaining medication they could not otherwise afford. These programs provide medication, financial assistance with insurance premiums and co-pays, diagnostic testing assistance, and travel assistance for clinical trials or consultations with disease specialists.
Medical Travel Assistance
NORD Rare Care Assistance Program:
Since 1987, NORD has provided assistance programs to help patients obtain life-saving or life-sustaining medication they could not otherwise afford. These programs provide medication, financial assistance with insurance premiums and co-pays, diagnostic testing assistance, and travel assistance for clinical trials or consultations with disease specialists.
Perscription Financial Assistance
NORD Rare Care Assistance Program:
Since 1987, NORD has provided assistance programs to help patients obtain life-saving or life-sustaining medication they could not otherwise afford. These programs provide medication, financial assistance with insurance premiums and co-pays, diagnostic testing assistance, and travel assistance for clinical trials or consultations with disease specialists.
Car Modification Financial Assistance
NOVA
Provides grants for accessible vans, wheelchair lifts, scooter or truck lifts, or car top carriers. The foundation will help with 25% of the cost with a cap of $5,000. aid is given based on financial need.
Equipment Financial Assistance
Open Wheelchair Foundation:
The Open Wheelchair Foundation is a collaborative group of people, working together to make a low cost, light weight, easy to build, and easy to operate, motorized pediatric wheelchair for small children who are in need.
Medical Travel Assistance
Operation Liftoff provides children with advanced illness three types of trips: dream trips for children with advanced illness, trips for medical treatment in other regions, and group trips to help teenagers with advanced illnesses leave the hospital and bond with peers. Parents and caregivers complete a form to request a trip. If a child does not qualify for treatment trip services, Operation Liftoff will provide alternative service information to families in need.
Wish Fulfillment
Operation Liftoff provides children with advanced illness three types of trips: dream trips for children with advanced illness, trips for medical treatment in other regions, and group trips to help teenagers with advanced illnesses leave the hospital and bond with peers. Parents and caregivers complete a form to request a trip. If a child does not qualify for treatment trip services, Operation Liftoff will provide alternative service information to families in need.
International Organizations
Organization for Rare Diseases India:
Provides similar services as GARD only they will know more about the resources and medical specialists available in India. You may call +91 8892-555-000 or visit their website for assistance.
International Organizations
Orphanet International Rare Disease Helplines:
Lists rare disease centers in different countries around the world that offer similar services to GARD. These rare disease centers will know the resources in their own countries better than GARD does. Orphanet is a consortium of 40 countries, within Europe and across the globe. Its mission is to gather and improve knowledge on rare diseases so as to improve the diagnosis, care, and treatment of patients with rare diseases.
Adaptive Clothing
Pajama City:
Youth to Adult size footed pajamas.
Adult Clothing
Pajama City:
Youth to Adult size footed pajamas.
General Family Support
General Financial Assistance
Parker's Purpose Foundation:
Monetary assistance given to any family who has a minor (18 and under) with a life altering illness or disability that is in an immediate financial crisis due to unforeseen medical expenses. Families who live in Ohio will be first priority in providing assistance but will extend outside the state if deemed necessary.
Medical Air Travel Assistance
Patient Airlift Services:
Patient AirLift Services (PALS) arranges free air transportation for individuals requiring medical diagnosis, treatment or follow-up, for compassionate assistance.
Seizure Response Dogs
Paws with a Cause:
PAWS Seizure Response Dogs are custom-trained to assist people who have epilepsy with tasks such as activating a life-alert system, finding someone to help, retrieving a phone or stimulating a person during a seizure. As a person recovers from a seizure, a PAWS Dog can retrieve medications or food, act as a brace to help them up and provide comfort. PAWS Seizure Response Dogs are NOT trained to protect or predict seizure activity. However, after several years with a client, some may develop the ability to alert their owner of an oncoming seizure. This behavior is not guaranteed to develop, nor to be consistent if it does develop.
Service Dog Financial Assistance
Paws with a Cause:
PAWS Seizure Response Dogs are custom-trained to assist people who have epilepsy with tasks such as activating a life-alert system, finding someone to help, retrieving a phone or stimulating a person during a seizure. As a person recovers from a seizure, a PAWS Dog can retrieve medications or food, act as a brace to help them up and provide comfort. PAWS Seizure Response Dogs are NOT trained to protect or predict seizure activity. However, after several years with a client, some may develop the ability to alert their owner of an oncoming seizure. This behavior is not guaranteed to develop, nor to be consistent if it does develop.
Service Dogs
Paws with a Cause:
PAWS Seizure Response Dogs are custom-trained to assist people who have epilepsy with tasks such as activating a life-alert system, finding someone to help, retrieving a phone or stimulating a person during a seizure. As a person recovers from a seizure, a PAWS Dog can retrieve medications or food, act as a brace to help them up and provide comfort. PAWS Seizure Response Dogs are NOT trained to protect or predict seizure activity. However, after several years with a client, some may develop the ability to alert their owner of an oncoming seizure. This behavior is not guaranteed to develop, nor to be consistent if it does develop.
General Financial Assistance
Philadelphia Area, Fred's Footsteps
Provides direct financial assistance for non-medical expenses, such as household bills, to make up for gaps in income as well as one-time extraordinary expenses, like medical equipment or home modifications.
Adaptive Clothing
Pool Pal:
Special Needs & Aquatic Therapy including reusable diapers, swimwear and flotation devices. The Special Needs products where added as a result of parents and adults calling in requesting a suit that would fit their handicapped child or themselves. The line has been a great success with children and adults with special needs.
Adaptive Swim
Pool Pal:
Special Needs & Aquatic Therapy including reusable diapers, swimwear and flotation devices. The Special Needs products where added as a result of parents and adults calling in requesting a suit that would fit their handicapped child or themselves. The line has been a great success with children and adults with special needs.
Adult Clothing
Pool Pal:
Special Needs & Aquatic Therapy including reusable diapers, swimwear and flotation devices. The Special Needs products where added as a result of parents and adults calling in requesting a suit that would fit their handicapped child or themselves. The line has been a great success with children and adults with special needs.
Diapers
Pool Pal:
Special Needs & Aquatic Therapy including reusable diapers, swimwear and flotation devices. The Special Needs products where added as a result of parents and adults calling in requesting a suit that would fit their handicapped child or themselves. The line has been a great success with children and adults with special needs.
Adaptive Beds
Privacy Pop:
THE BED TENT FOR BETTER SLEEP The seclusion solution for naptime, bedtime, playtime and alone time
Genetic Testing
Probably Genetic:
Free testing program applies to all people in the US (except New York) with symptoms suggestive of pediatric seizure disorders. People affected by these conditions may present with seizures, developmental delays, and abnormal muscle movements. Patients who submit to the program are reviewed on a case by case basis to determine their eligibility for a free genetic test.
Wandering Safety
Project Lifesaver:
Project Lifesaver is the premier search and rescue program operated internationally by public safety agencies, and is strategically designed for "at risk" individuals who are prone to the life threatening behavior of wandering. The primary mission of Project Lifesaver is to provide timely response to save lives and reduce potential injury for adults and children with the propensity to wander due to a cognitive condition.
Adaptive Swim
Puddle Jumper:
Unique, comfortable, and protective, The Original Puddle Jumper stands out from traditional life jackets while still providing Coast Guard-approved safety. Our high-quality products undertake thorough testing to instill parents with the confidence that their child is well protected.
Home Modifications Financial Assistance
Ramps.org: Provides the necessary help for kids that need a ramp to move from a home to the outside.
International Organizations
Rare Diseases Foundation of Iran:
Provides similar services as GARD only they will know more about the resources and medical specialists available in Iran. Their services are provided in Farsi and English. You may call +98 (21) 66572937 or visit their website for assistance.
International Organizations
Rare Diseases South Africa:
Provides similar services as GARD only they will know more about the resources and medical specialists available in South Africa. You may call 072 476 7552 or visit their website for assistance.
International Organizations
Rare Disorders NZ:
Provides similar services as GARD only they will know more about the resources and medical specialists available in New Zealand. You may call +64 4 385 1119 or visit their website for assistance.
International Organizations
Rare Voices Australia:
Provides similar services as GARD only they will know more about the resources and medical specialists available in Australia. You may call +61 (0) 497 003 104 or visit their website for assistance.
Understanding Research
Receive your free Rare Research Roadmap
The road to rare disease treatment and research is not often a straight path.
This roadmap is designed to put you in the driver's seat and in control of how to move your research forward. Whether you are an individual, advocate, or organization, this roadmap was created to help you better understand some of the potential routes to treatment and some of the key concepts that are part of these processes.
Financial Planning
Receive your free toolkit: Family Planning and Financial Considerations
Choosing to start or expand a family is one of the most significant decisions couples will make in their lives. A decision that involves emotional, physical, psychological, lifestyle, and financial factors. This is especially true for people living with a rare disease and those who are carriers.
Adult Long-Term Supports
Receive your free toolkit: Understanding Career Opportunities and Employment Benefits
This toolkit is designed to help those living with a rare disease to understand and evaluate the work-related options and employment benefits that will best suit your abilities, healthcare needs, and financial resources
Future Planning
Receive your free toolkit: Understanding Career Opportunities and Employment Benefits
This toolkit is designed to help those living with a rare disease to understand and evaluate the work-related options and employment benefits that will best suit your abilities, healthcare needs, and financial resources
International Organizations
Seizure Support Resources
Rescue Medications Video Demonstrations:
Rescue medications can be an essential part of a Seizure Action Plan and are given to the person having the seizure.
Click on this link to explore seizure rescue medication demonstration videos
Respite Resources
Adaptive Clothing
Reusable Swim Diaper:
Boys' Trunks with Built-in Reusable Swim Diaper:
Sizes 6 months to 4t
Adaptive Swim
Reusable Swim Diaper:
Boys' Trunks with Built-in Reusable Swim Diaper:
Sizes 6 months to 4t
Adaptive Clothing
Reusable Swim Diaper:
Girls' One-Piece Swimsuit with Built in Reusable Swim Diaper:
Sizes 6 months to 4t
Adaptive Swim
Reusable Swim Diaper:
Girls' One-Piece Swimsuit with Built in Reusable Swim Diaper:
Sizes 6 months to 4t
Seizure Support Resources
RSC Redefining Seizure Care - In-Home EEG
Information on in-home EEG services.
Safety Tips
Safe Kids Worldwide:
All children are special and require different levels of attention based on their unique needs. To help keep children with physical, developmental or cognitive disabilities safe in the home, we created a series of safety videos highlighting how you can take precautions to help prevent injuries to your child with special needs.
Adaptive Beds
Safe Place Bedding:
Portable, inflatable beds provide a safe sleeping solution for special needs loved ones at home or away. Portable, inflatable beds provide a safe sleeping solution for special needs loved ones at home or away.
Travel Resources
Safe Place Bedding:
Portable, inflatable beds provide a safe sleeping solution for special needs loved ones at home or away. Portable, inflatable beds provide a safe sleeping solution for special needs loved ones at home or away.
Wish Fulfillment
Second Wind Dreams works to enhance the life of those living in elder care communities in the United States and Canada and grants wishes to those living in nursing, assisted living, and hospice facilities.
Seizure Support Resources
Seizure Support Resources
Seizure Tracker is dedicated to providing patients, doctors and researchers with free comprehensive tools to help understand relationships between seizure activity and anti-epileptic therapies. The reports generated by Seizure Tracker become a valuable communication aid when meeting with doctors because all the necessary information is in one brief report. With a simple keystroke, you can customize a report to outline talking points you'd like to discuss with your doctor.
Equipment Financial Assistance
Small Steps in Speech:
Provides grants on behalf of children with speech and language disorders for therapies, treatments, communicative devices, and other services aimed at improving their communication skills. Small Steps in Speech will accept applications on behalf of children between 3 and 22 years of age at the time of the application deadline and families with a combined household income under $100,000.
Future Planning
Social Security (SSI):
Prepare and apply
General Financial Assistance
Social Security (SSI):
Prepare and apply
Social Security
Social Security (SSI):
Prepare and apply
Future Planning
Social Security Disability Resource Center:
Learn how to apply, how medical conditions are considered, how the decision proess works, how many times you may be denied, how to file appeals, how tot get your case status and much more.
General Financial Assistance
Social Security Disability Resource Center:
Learn how to apply, how medical conditions are considered, how the decision proess works, how many times you may be denied, how to file appeals, how tot get your case status and much more.
Social Security
Social Security Disability Resource Center:
Learn how to apply, how medical conditions are considered, how the decision proess works, how many times you may be denied, how to file appeals, how tot get your case status and much more.
Adult Clothing
SOSecure Containment Swim Brief
Made by by Discovery Trekking Outfitters. An effective and discreet unisex swimming undergarment for adults and teens.
Adaptive Clothing
SOSecure Containment Swim Brief:
Made by by Discovery Trekking Outfitters. An effective and discreet unisex swimming undergarment for adults and teens.
Adaptive Swim
SOSecure Containment Swim Brief:
Made by by Discovery Trekking Outfitters. An effective and discreet unisex swimming undergarment for adults and teens.
Car Modification Financial Assistance
Special Kids Fund: Our Wheelchair Van Assistance Program helps needy families nationwide access handicap vans for their disabled family member. Help us give the joy of mobility to all children!
Learn More
Adaptive Recreation Organizations
Special Needs Resource Project
By State
Special Needs Resource Project (SNRP) provides a basic guide for parents of children with chronic health issues, disabilities and special needs. This site is designed to help you get a jump-start in your search for helpful information and resources. Every situation is unique. Our aim is to help you learn the basic skills you'll need to obtain the specific resource information, equipment, and services your child and family needs. Though focused on children ages 0-22, most of the information we offer is applicable to adults as well.
Resource Directory
Special Needs Resource Project
By State
Special Needs Resource Project (SNRP) provides a basic guide for parents of children with chronic health issues, disabilities and special needs. This site is designed to help you get a jump-start in your search for helpful information and resources. Every situation is unique. Our aim is to help you learn the basic skills you'll need to obtain the specific resource information, equipment, and services your child and family needs. Though focused on children ages 0-22, most of the information we offer is applicable to adults as well.
Adaptive Clothing
Adaptive Swim
Diapers
Adaptive Clothing
Splash About Swim Shorts:
Adult Sizes XS to XL. No matter the reason for fecal incontinence the benefits of swimming are still the same and with Splash About's Splash jammers you can swim without the worry of fecal leaks or the embarrassment of wearing incontinence shorts or nappy. The enhanced technical design ensures the Splash jammers mold to your body ensuring a snug fit that moves as you move, whatever the activity. Manufactured from high-quality, soft neoprene for comfort and secured by specialist ribs at the waist, with the addition of medical grade silicone at the thigh, Splash jammers are the most secure incontinence short in the world, giving you peace of mind every time you swim. Created in sporty unisex colors, these Jammers can be worn alone or under a board short for a leak-free swim
Adaptive Swim
Splash About Swim Shorts:
Adult Sizes XS to XL. No matter the reason for fecal incontinence the benefits of swimming are still the same and with Splash About's Splash jammers you can swim without the worry of fecal leaks or the embarrassment of wearing incontinence shorts or nappy. The enhanced technical design ensures the Splash jammers mold to your body ensuring a snug fit that moves as you move, whatever the activity. Manufactured from high-quality, soft neoprene for comfort and secured by specialist ribs at the waist, with the addition of medical grade silicone at the thigh, Splash jammers are the most secure incontinence short in the world, giving you peace of mind every time you swim. Created in sporty unisex colors, these Jammers can be worn alone or under a board short for a leak-free swim
Adult Clothing
Splash About Swim Shorts:
Adult Sizes XS to XL. No matter the reason for fecal incontinence the benefits of swimming are still the same and with Splash About's Splash jammers you can swim without the worry of fecal leaks or the embarrassment of wearing incontinence shorts or nappy. The enhanced technical design ensures the Splash jammers mold to your body ensuring a snug fit that moves as you move, whatever the activity. Manufactured from high-quality, soft neoprene for comfort and secured by specialist ribs at the waist, with the addition of medical grade silicone at the thigh, Splash jammers are the most secure incontinence short in the world, giving you peace of mind every time you swim. Created in sporty unisex colors, these Jammers can be worn alone or under a board short for a leak-free swim
Respite Resources
State Lifespan Respite Programs:
Funded by the Administration for Community Living, US Department of Health and Human Services, State Lifespan Respite Programs or Projects are run by a designated state government lead agency, which works in collaboration with a state respite coalition and an Aging and Disability Resource Center Program/No Wrong Door System. Their purpose is to implement statewide systems of coordinated, community-based respite for family caregivers caring for individuals with special needs of all ages. Since 2009. thirty-seven states and the District of Columbia have received Lifespan Respite grants from ACL. Those states that currently have federal grants or have sustained Lifespan Respite grant activities initiated with earlier grants or are supported by state funding are identified below with state agency contact information. A list of all states granted awards since 2009 are listed in the right-hand menu. You may also want to contact the State Respite Coalition for additional information and respite resources.
Medical Financial Assistance
Medical Waivers
Medical Financial Assistance
Wish Fulfillment
Sunshine Foundation helps fulfill the dreams of children 3 to 18 years old who have advanced cancer, special needs, or who have faced abuse.
Wish Fulfillment
Sunshine Foundation: Sunshine Foundation's sole purpose is to answer the dreams of chronically ill, seriously ill, physically challenged and abused children ages three to eighteen, whose families cannot fulfill their requests due to financial strain that the child's illness may cause.
Seizure Support Resources
Surgery for Difficult-to-Treat Epilepsy: A Step-By-Step Guide for Patients and Families
