Families and Caregivers of those with dup15q syndrome
Community Connections and Support
We are parents, grandparents, professionals, and advocates providing support for patients, families, and caregivers. We are passionate about personal connections, family support, community awareness, and scientific research.
We know the importance of connections and creating a community where families can ask questions, learn about dup15q syndrome, get involved and advocate for those affected by the syndrome. We hope that in the Dup15q Alliance you will find friendship, support, answers, and hope.
Dup15q Alliance connects families online through multiple platforms and in-person gatherings.
Parent Support Page
Our Dup15q Alliance Facebook groups (Dup15q Alliance and Dup15q Alliance Parent Support) have provided a lifeline for so many of our families.
The official Dup15q Alliance Parent Support Facebook Group for Parents or full-time caregivers of individuals with dup15q syndrome to discuss and share the ins-and-outs and ups-and-downs of raising an individual with a duplication of chromosome 15q. Since our members are all over the world, 24-hours a day, 7-days a week someone is there for you to ask your questions, support you, and help you. This private Facebook group is only for the members of our nonprofit organization. Requests to join this group are verified by the Executive Director and/or the Family In-Take Coordinator.
Community Connections Chats
Community Connections Chats are a way to expand our virtual family connections for parents/caregivers through peer-to-peer zoom chats.
This will be open to all families regardless of your duper’s age, once a month for one hour.
It’s a time to check in with others walking your path, get ideas about programs, resources or tips and tricks in navigating life with extra. These will be held on the last Tuesday of every month. Please register for each date you plan to attend.
*also available in spanish
Check our Calendar for the most up-to-date events.
Questions? Email Outreach@dup15q.org
Family Gatherings
Dup15q Alliance supports in-person family gatherings that are open to any Dup15q family to attend. These get-togethers offer families the opportunity to make new friends, renew old ties, and spend some relaxed time together with other families. It is a unique opportunity to spend time with families who completely understand the challenges and joys of raising a child with dup15q syndrome. For more information or to sign up to host a gathering contact outreach@dup15q.org
View our Calendar for the most updated events.
Dup15q Alliance Family Conference
Dup15q Alliance International Family Conferences are held every other year to provide families with an opportunity to meet and learn. We connect families and professionals, from the US and internationally, to provide pertinent information regarding Dup15q Syndrome advances and treatments. Tailored to benefit the entire family, our conferences include scientific, genetic, and clinical discussions, respite care, sibling sessions, and group activities. Sessions are held on the latest research, treatment, and therapies with views from clinicians, providers, and parents.
Break-out sessions have also been organized for Moms and Dads that offer a wonderful opportunity to gather with other parents and share the challenges, fears, hopes and successes of raising a family with Dup15q in the mix. These honest exchanges bring both tears and laughter, and most of all, the healing of knowing that you are not alone in your experience parenting a child with Dup15q.
Parent Ambassadors
As a parent, receiving a diagnosis for your child that is life-changing will shake you to your core. But we are not alone! Having a safe place to explore feelings of “this is not the way it’s supposed to be” is what Dup15q Alliance Parent to Parent Ambassadors is all about. Sharing the emotional process that often comes with the diagnosis of dup15q syndrome with someone who has also experienced these feelings through Peer Support, can be helpful to many families.
Parent to Parent Ambassadors are Peer Support Specialists who have walked the path of a dup15q diagnosis and have volunteered to support their fellow dup15q families. Parent Ambassadors have completed a 6-week Child Neurology Peer Support Training to listen to their peers along this emotional journey without judgment. Peer Support is a process in which reciprocal support is facilitated by one trained individual who shares his/her common life experience with another individual. This supportive, fluid process aims to enable mutual empowerment and a sense of connection.
Dup15q Alliance has been providing family support and advocacy to families affected by dup15q syndrome for over 28 years. One of our main goals is to create a community where families can ask questions, learn about dup15q syndrome, get involved and advocate for those affected by the syndrome. We envision a world where families, clinicians, and advocates enable dup15q individuals to thrive.
We are proud to continue to offer programs that help uplift, support, and engage our community by providing the basic principles that the Alliance was founded upon through a variety of resources and support options. Dup15q Alliance Programs offers programs, resources, and support at all stages of life, through all transitions.
