The Rare As One grant will support Project 8p’s collaboration with the Dup15q Alliance, another patient-led advocacy group, to develop the Commission on Novel Technologies for Neurodevelopmental Copy Number Variants (CNVs). The Commission, recently founded by the two organizations, aims to investigate the challenges common to neurodevelopmental CNVs in order to accelerate therapeutic developments.
“Patients’ active involvement is critical for accelerating the development of treatments.”
EPILEPSY AWARENESS 365 DAYS A YEAR Purple (lavender) is the international color representing epilepsy awareness and we want everyone across the world to know. Inspired by Purple Day® – March 26, the international day for epilepsy awareness, we created Purple Day Every...
Dup15q Alliance is proud to be a participant of the The Interagency Collaborative to Advance Research in Epilepsy (ICARE). ICARE is a voluntary working group of public and non-profit organizations in the United States that provide sustained funding for epilepsy...
Dup15q Alliance is proud to be a part of the THRIVE initiative. THRIVE is a collaborative initiative to engage, embrace and drive change in the rare disease community. By acknowledging the need to communicate and lean on the strengths of our allies, brighter futures...
ADA Center
Southwest ADA Center
2323 S. Shepherd, #1000
Houston, TX, 77019
http://www.southwestada.org
Assistive Technology
Louisiana Assistive Technology Access Network
P.O. Box 14115
Baton Rouge, LA, 70898
http://www.latan.org
Autism
Autism Society of Louisiana
P.O. Box 80162
Baton Rouge, LA, 70898
http://www.lastateautism.org
CHIP
(health care for low-income uninsured children)
Louisiana Children’s Health Insurance Program
LaCHIP Processing Office
628 N. 4th Street
P. O. Bo 629
Baton Rouge, LA 70821-0629
http://new.dhh.louisiana.gov/index.cfm/page/222
D D Council
Louisiana Developmental Disabilities Council
P.O. Box 3455
Baton Rouge, LA, 70821-3455
swinchel@dhh.la.gov
http://www.laddc.org
Developmental Disabilities
Office for Citizens with Developmental Disabilities
P.O. Box 3117, Bin 21
Baton Rouge, LA, Baton Rouge
http://www.dhh.louisiana.gov
Early Intervention
Louisiana Part C Early Intervention
Office for Citizens with Developmental Disabilities
Louisiana Department of Health & Hospitals
P.O. Box 3117, Bin 21, 682 N. 4th Street
Baton Rouge, LA, 70802
http://www.earlysteps.dhh.louisiana.gov
Epilepsy
Epilepsy Foundation of Louisiana
3701 Canal Street, Suite H
New Orleans, LA, 70119
http://www.epilepsylouisiana.org
Independent Living
To find out the contact information for the Statewide Independent Living Council (SILC) in your state, contact:
Independent Living Research Utilization Project
The Institute for Rehabilitation and Research
2323 South Sheppard, Suite 1000
Houston, TX, 77019
http://www.ilru.org/projects/cil-net/cil-center-and-association-directory
To find out the contact information for centers for independent living (CILs) in your state, contact:
National Council on Independent Living
2013 H St. NW – 6th Floor
Washington, DC, 20006
http://www.ncil.org
Intellectual & Developmental Disabilities
The Arc of Louisiana
8336 Kelwood Drive
Baton Rouge, LA, 70806
http://www.thearcla.org
Learning Disabilities
Division of Educational Improvement and Assistance
Louisiana Department of Education
P.O. Box 94064
Baton Rouge, LA, 70804-9064
http://www.louisianabelieves.com/academics/students-with-disabilities
Mediation
Dispute Resolution
Louisiana Department of Education
1201 North Third Street
Baton Rouge, LA 70802-5243
http://www.louisianabelieves.com/academics/students-with-disabilities/dispute-resolution
Mental Health
Office of Behavioral Health
Louisiana Department of Health and Hospitals
628 N. 4th Street, 4th Floor
P.O. Box 4049
Baton Rouge, LA, 70821-4049
http://new.dhh.louisiana.gov/index.cfm/subhome/10
Mental Health America of Louisiana
660 N. Foster Drive, Suite C-201
Baton Rouge, LA, 70806
http://www.mentalhealthamerica.net/mental-health-america-louisiana
NAMI Louisiana, National Alliance on Mental Illness
P.O. Box 40517
Baton Rouge, LA, 70835
(866) 851-6264
http://www.namilouisiana.org
Louisiana Federation of Families for Children’s Mental Health
5627 Superior Drive, Suite #2
Baton Rouge, LA, 70816-6085
(225) 293-3508
Parent Organizations
Community Parent Resource Center
(Serving greater New Orleans area)
Pyramid Community Parent Resource Center
3132 Napoleon Avenue
New Orleans, LA, 70125
http://www.pyramidparentcenter.org
Families Helping Families of Louisiana
(a statewide network of ten regional family resource centers)
100 Benman Rd. Lafayette, LA 70506
Lafayette, LA 70506
http://www.fhfla.org
Parent Teacher Association (PTA)
Louisiana Parent-Teacher Association
9151 Interline Avenue, suite 1A
Baton Rouge, LA, 70809
http://www.louisianapta.org/
Preschool, Disabilities
Division of Standards, Assessments and Accountability
Louisiana Department of Education
1201 North Third Street
P.O. Box 94064
Baton Rouge, LA 70802-5243
http://www.louisianabelieves.com/early-childhood/early-childhood-programs
Protection & Advocacy
Advocacy Center
8325 Oak Street
New Orleans, LA, 70118
http://www.advocacyla.org
Relay Services
(800) 947-5277 (V)
(800) 846-5277 (TTY); 711 (TTY)
(888) 550-5277 (ASCII)
(888) 272-5530 (Speech to Speech)
(800) 737-1813 (Spanish)
Speech, Language, and Hearing
Louisiana Speech-Language-Hearing Association
8550 United Plaza Boulevard, Suite 1001
Baton Rouge, LA, 70809
http://www.lsha.org
Special Education
Louisiana Department of Education
1201 North Third Street
P.O. Box 94064
Baton Rouge, LA 70802-5243
http://www.louisianabelieves.com/academics/students-with-disabilities
Special Format Library
State Library of Louisiana
Talking Books
701 N. Fourth Street
Baton Rouge, LA, 70802
http://www.state.lib.la.us/special-services/talking-books
Special Health Care Needs
Louisiana Department of Health and Hospitals
Office of Public Health
Children’s Special Health Services
1450 L & A Road
Metairie, LA, 70802
http://new.dhh.louisiana.gov/index.cfm/page/740
Families Helping Families
286 Highway 3185
Thibodaux, LA, 70301
(985) 447-4461
(800) 331-5570
Bayoulandfhf@blfhf.org
http://blfhf.org
State Web Site
Connect with your state’s official website to find all manner of state agencies and information, including how to contact your governor and/or your representatives in the Senate and House:
http://www.louisiana.gov
UCEDD
Louisiana UCEDDERS
LSUHSC- Human Development Center
School of Allied Health Professions
1900 Gravier Street 10th Floor Room 1036
New Orleans, LA, 70112
http://www.hdc.lsuhsc.edu
Vocational Education and Rehabilitation
Louisiana Workforce Commission
Vocational Rehabilitation Program
1001 N 23rd St
Baton Rouge, LA, 70802
(225) 342-3111
http://www.laworks.net/workforcedev/lrs/lrs_rehabilitation.asp
Other Organizations
Easter Seals Louisiana
1010 Common St., Suite 2000
New Orleans, LA, 70112-1617
http://www.louisiana.easterseals.com
Special Olympics Louisiana
1000 E. Morris Avenue
Hammond, LA, 70403
http://www.laso.org
Louisiana Occupational Therapy Association
P.O. Box 14806
Baton Rouge, LA, 70898
http://www.lota.org
Louisiana Health and Rehabilitation Center, Inc.
2121 Wooddale, Blvd
Baton Rouge, LA, 70806
http://www.lahealthandrehab.org
Louisiana Citizens for Action Now (LACAN)
Post Office Box 3455
626 Main Street, Suite A
Baton Rouge, LA 70821-3455
http://www.lacanadvocates.org
Governor’s Office of Disability Affairs
P.O. Box 94004
Baton Rouge, LA, 70804-9004
(225) 219-7550
(844) 860-1413
disability.affairs@la.gov
http://gov.louisiana.gov/page/disability-affairs
ADA Center
Great Plains ADA Center
100 Corporate Lake Drive
Columbia, MO, 65203
http://www.gpadacenter.org/
Assistive Technology
Nebraska Assistive Technology Partnership
3901 N. 27th Street, Suite 5
Lincoln, NE, 68521
http://www.atp.ne.gov
D D Council
Nebraska Planning Council on Developmental Disabilities
Department of Health and Human Services
301 Centennial Mall South
P.O. Box 95044
Lincoln, NE, 68509
http://dhhs.ne.gov/pages/DD-Planning-Council.aspx
Developmental Disabilities
Division of Developmental Disabilities
Nebraska Department of Health and Human Services
301 Centennial Mall South, Lincoln, Nebraska
P.O. Box 98947
Lincoln, NE, 68509-8947
http://dhhs.ne.gov/Pages/Developmental-Disabilities.aspx
Early Intervention
Nebraska Department of Education
301 Centennial Mall South
P.O. Box 94987
Lincoln, NE, 68509-4987
http://edn.ne.gov/
Health care
https://www.ehealthinsurance.com/nebraska-health-insurance
Independent Living
Nebraska Statewide Independent Living Council
215 Centennial Mall South, Suite 210
Lincoln, NE, 68508
http://www.nesilc.org
To find out the contact information for centers for independent living (CILs) in your state, contact:
National Council on Independent Living
1710 Rhode Island Avenue, NW, 5th Floor
Washington, DC, 20036
http://www.ncil.org
Intellectual & Developmental Disabilities
The Arc of Nebraska
1672 Van Dorn Street
Lincoln, NE, 68502
http://www.arc-nebraska.org
Mental Health
Division of Behavioral Health Services
Nebraska Department of Health and Human Services
P.O. Box 98925
Lincoln, NE, 68509-8925
http://dhhs.ne.gov/Pages/Behavioral-Health.aspx
Nebraska Family Support Network
3568 Dodge Street, Suite #2
Omaha, NE, 68131-3222
http://nefamilysupportnetwork.org/
NAMI-Nebraska
1941 S. 42nd Street, Suite 517
Omaha, NE, 68105
https://naminebraska.org
Parent Organizations
Parent Teacher Association (PTA)
Nebraska Congress of Parents and Teachers
13304 W. Center Road, Suite 221
Omaha, NE, 68144
http://www.nebraskapta.org
Parent Training and Information Center (PTI) Nebraska
1941 S. 42nd St., Suite 205
Omaha, NE 68105
http://www.pti-nebraska.org
Parent to Parent Network
328 W. Norfolk Ave.
Norfolk, NE, 68701
http://www.parent-parent.org
Protection & Advocacy
Disability Rights Nebraska
134 South 13th Street, Suite 600
Lincoln, NE, 68508
http://www.disabilityrightsnebraska.org/
Relay Services
(888) 272-5528 (Spanish)
(800) 833-0920 (V); 711 (TTY)
(800) 833-7352 (TTY/ASCII)
(888) 696-0629 (Fast ASCII)
(888) 272-5527 (Speech to Speech)
Special Education
Office of Special Education
Nebraska Department of Education
301 Centennial Mall South
P.O. Box 94987
Lincoln, NE, 68509-4987
http://www.education.ne.gov/sped
Special Format Library
Nebraska Library Commission
Talking Book and Braille Service
The Atrium
1200 N Street, Suite 120
Lincoln, NE, 68508-2023
http://www.nlc.state.ne.us/tbbs
Special Health Care Needs
Nebraska Department of Health and Human Services
301 Centennial Mall South
P.O. Box 95026
Lincoln, NE, 68509-5026
http://dhhs.ne.gov/Pages/default.aspx
Speech, Language, and Hearing
Nebraska Speech-Language-Hearing Association
1633 Normandy Court, Suite A
Lincoln, NE 68512
http://www.nslha.org
State Web Site
Connect with your state’s official website to find all manner of state agencies and information, including how to contact your governor and/or your representatives in the Senate and House:
http://www.nebraska.gov
Transition Services
Special Populations Office
Nebraska Department of Education
6949 S. 110th Street
Omaha, NE, 68128
https://www.education.ne.gov
UCEDD
Munroe-Meyer Institute for Genetics and Rehabilitation
University of Nebraska Medical Center
985450 Nebraska Medical Center
Omaha, NE, 68198-5450
http://www.unmc.edu/mmi
Vocational Education, Disabilities
School Counseling
Nebraska Department of Education
301 Centennial Mall South
P.O. Box 94987
Lincoln, NE, 68509-4987
https://www.vr.nebraska.gov
Vocational Rehabilitation
Nebraska Department of Education
301 Centennial Mall South, 6th Floor
P.O. Box 94987
Lincoln, NE, 68509-4987
https://www.education.ne.gov/arra/vocational-rehabilitation/
Other Organizations
The Ollie Webb Center Pilot Parents
1941 S. 42nd Street, Suite 122
Omaha, NE, 68105
http://www.olliewebbinc.org
Easter Seals Nebraska
12565 West Center Road, Suite 100
Omaha, NE 68144-8144
http://www.easterseals.com/ne
Answers 4 Families
206 S. 13th Street, Suite 1000
Lincoln, NE, 68588-0227
http://www.answers4families.org
People First of Nebraska
Several chapters statewide
P.O. Box 5292 – Grand Island, NE 68802
http://www.peoplefirstnebraska.com
ADA Center
Northwest ADA Center
Center for Continuing Education in Rehabilitation
University of Washington
6912 220th St SW, #105
Mountlake Terrace, WA, 98043
(800) 949-4232 (V/TTY)
(425) 248-2480 (V/TTY)
dbtacnw@u.washington.edu
http://www.nwadacenter.org
Autism
Golden Heart (AK) Autism Society
607 Old Steese Hwy, Suite B #285
Fairbanks, AK, 99701
(907) 374-4421
(877) 374-4421
info@asagoldenheart.org
http://www.asagoldenheart.org
Career & Technical Education
Office of Career and Technical Education
801 West 10th Street, Suite 200
P.O. Box 110500
Juneau, AK, 99811-0500
(907) 465-2800
http://www.education.alaska.gov
CHIP Program
Denali KidCare
P.O. Box 110601
Juneau, AK, 99811-0801
(907) 465-1696
http://dhss.alaska.gov/dhcs/Pages/denalikidcare/default.aspx
D D Council
Governor’s Council on Disabilities and Special Education
3601 C Street, Suite 740
Anchorage, AK, 99503
(888) 269-8990
(907) 269-8990
GCDSE@alaska.gov
http://dhss.alaska.gov/
Developmental Disabilities
Developmental Disabilities & Children with Complex Medical Conditions
Senior and Disabilities Services
3601 C Street, Suite 310
Anchorage, AK, 99503
(800) 478-9996
(907) 269-3666
http://dhss.alaska.gov/dsds/Pages/default.aspx
Early Intervention
Early Intervention/Infant Learning Program
ILP Main Office
550 West 8th Avenue
Anchorage, AK, 99501
(877) 477-3659
http://dhss.alaska.gov/
Independent Living
To find out the contact information for the Statewide
Independent Living Council (SILC) in your state, contact:
Independent Living Research Utilization Project
The Institute for Rehabilitation and Research
1333 Moursand Street
Houston, TX, 77030
(713) 520-0232 (V)
(713) 520-5136 (TTY)
ilru@ilru.org
http://www.ilru.org
To find the contact information for centers for
independent living (CILs) in your state, contact:
National Council on Independent Living
2013 H. Street NW, 6th floor
Washington, DC, 20006
(202) 207-0334 (V)
(202) 207-0340 (TTY)
ncil@ncil.org
http://www.ncil.org
Intellectual & Developmental Disabilities
The Arc of Anchorage
2211 Arca Drive
Anchorage, AK, 99508
(907) 277-6677
info@thearcofanchorage.org
http://thearcofanchorage.org
Mental Health
Division of Behavioral Health
Department of Health and Social Services
P.O. Box 110620
Juneau, AK, 99811-0620
(907) 465-3370
(907) 465-2225 (TTY)
http://dhss.alaska.gov/dbh/Pages/default.aspx
Alaska Mental Health Board
PO Box 110608
Juneau, AK, 99811
(888) 464-8920
http://dhss.alaska.gov/amhb/Pages/default.aspx
NAMI Alaska, National Alliance on Mental Illness
PO Box 201753
Anchorage, AK, 99520
(800) 478-4462
(907) 277-1300
alaskanami@gmail.com
https://www.namialaska.org/
Parent Organizations
Community Parent Resource Center
LINKS Parent Resource Center
3161 E. Palmer-Wasilla Hwy, suite 2
Wasilla, AK, 99654
(907) 373-3632
linksinfo@linksprc.org
http://linksprc.org/
Protection & Advocacy
Disability Law Center of Alaska
3330 Arctic Boulevard, Suite 103
Anchorage, AK, 99503
(800) 478-1234
(907) 565-1002 (V/TTY)
akpa@dlcak.org
http://www.dlcak.org
Relay Services
(800) 770-8255 (V)
(800) 770-8973 (TTY); 711 (TTY)
(866) 355-6198 (Speech to Speech)
Special Education
Office of Special Education
Alaska Department of Education
801 W. 10th Street, Suite 200
PO Box 110500
Juneau, AK, 99801-1894
(907) 465-8693
http://www.eed.state.ak.us/tls/sped/
Special Health Care Needs
Family to Family Health Information Center
Stone Soup Group
307 E. Northern Lights Blvd, Suite 100
Anchorage, AK, 99503
(907) 561-3701
(887) 786-7327 (toll free)
info@stonesoupgroup.org
http://www.stonesoupgroup.org
Special Format Library
Alaska State Library
Talking Book Center
344 W. Third Avenue, Suite 125
Anchorage, AK, 99501
(800) 776-6566
(907) 269-6575
http://talkingbooks.alaska.gov/
Speech, Language, & Hearing
Alaska Speech-Language-Hearing Association
PO Box 111993
Anchorage, AK, 99511
(907) 212-0211
aksha907@gmail.com
http://www.aksha.org/
UCEDD
Center for Human Development
University of Alaska Anchorage
2702 Gambell Street, Suite 103
Anchorage, AK, 99503
(907) 272-8270
info@alaskachd.org
http://www.alaskachd.org
Vocational Rehabilitation
Division of Vocational Rehabilitation
801 W. 10th Street, Suite A
Juneau, AK, 99801
(907) 465-2814
http://labor.state.ak.us/dvr/home.htm
Other Organizations
Easter Seals Alaska
670 W. Fireweed Lane, Suite 105
Anchorage, AK, 99503
(907) 277-7325
http://www.alaska.easterseals.com
