National Organizations
- National Down Syndrome Congress
- National Down Syndrome Society
- International Mosaic Down Syndrome Assoc.
US Organizations
Northeast:
- Aim High! (Albany, NY)
- Bringing Up Down Syndrome (Southern NJ)
- Bucks County DS Interest Group (PA)
- Connecticut Down Syndrome Congress
- Down Syndrome Advocacy Foundation (Suffolk County, Long Island)
- Down Syndrome Assoc. of Westchester, NY
- Down Syndrome Parent Network of Eastern PA
- Down Syndrome Parent Support Group of Genesee County (NY)
- Down Syndrome Society of Rhode Island
- Down Syndrome Assoc. of Delaware
- Friends of Trisomy 21 Center (Philadelphia)
- Hudson Valley Down Syndrome Assoc. (NY)
- KIIDS (Southern New Jersey)
- Massachusetts DS Congress
- PODS – Montgomery County (Maryland)
- Network 21 (Central NJ)
- Southern Maine DS Family Network
- Trisomy 21 of Northern NY
Southeast:
- Down Syndrome Assoc. of Atlanta
- Down Syndrome Assoc. of Fredericksburg, VA
- Down Syndrome Assoc. of Hampton Roads (SE Virginia)
- Down Syndrome Association of the Lowcountry Charleston, SC
- Down Syndrome Assoc. of Memphis and Mid-South
- Down Syndrome Assoc.of Middle Tennessee
- Down Syndrome Assoc. of New Orleans
- Down Syndrome Assoc. of Roanoke, Virgina
- DS Family and Friends (Little Rock, AR)
- Down Syndrome of Louisville, KY
- Gold Coast DS Org. of Broward County, FL
- Gold Coast Org. of Palm Beach County, FL
- Gulf Coast DS Society (Southern Miss.)
- PC Downies (Panama City, FL)
- Piedmont DS Support Network (N Carolina)
- PODS Angels Support Group in Fort Lauderdale, FL
- Triangle Down Syndrome Network (N Carolina)
- Up With Downs (Shreveport, LA)
- Down Syndrome Association of Miami
Middle:
- Down Syndrome Assoc. of Central Ohio
- Down Syndrome Assoc. of Central Oklahoma
- Down Syndrome Assoc. of Greater Cincinnati
- Down Syndrome Assoc. of Greater St. Louis
- Down Syndrome Association of Minnesota
- Down Syndrome Assoc. of Northern Indiana
- Down Syndrome Assoc. of West Michigan
- Down Syndrome Assoc. of Wisconsin
- Down Syndrome Development Counsel (N. Ill.)
- F.E.D.S. (Sterling Heights, Mich)
- Indiana DS Foundation (Indianapolis)
- Kansas City Down Syndrome Guild Assoc.
- Miami Valley Down Syndrome Assoc. (Dayton, OH)
- National Assoc. for Down Syndrome (Chicago)
- NDSS Nebraska (Omaha)
- Oshkosh Down Syndrome Parent Support Group
- Riverbend Down Syndrome Parent Support Group (SW Illinois)
- SW Chicago Suburban Support Group
- Up With Down (Des Moines)
- Wichita Downs Support Group
West & Southwest:
- Down Syndrome Assoc. of Central Texas
- Down Syndrome Assoc. of Houston
- Down Syndrome Assoc. of Los Angeles
- Down Syndrome Association of Orange County (Cal.)
- Down Syndrome Connection of Tucson
- Down Syndrome Group of Salt Lake City
- DS Network (Phoenix, AZ)
- Down Syndrome Organization of Southern Nevada
- Down Syndrome Partnership of Tarrant County (Ft. Worth)
- Down Syndrome Support Group of the High Desert
- Down Syndrome Assoc of Ventura County (Cal.)
- Sharing Down Syndrome Arizona
- Southern Arizona Network for DS
Rocky Mountain/Northwest:
- Colorado Springs Down Syndrome Assoc.
- Down Syndrome Outreach of Whatcom County (Wash.)
- Mile High Down Syndrome Assoc. (Denver area)
- Upside! (Wash.)
- Uptown Downs of Salt Lake City
- Up With Down Assoc. (Utah County)
- Utah Down Syndrome Foundation
Intercontinental US:
International Organizations
Argentina:
Australia:
- DS Society of South Australia
- DS Assoc. of New South Wales
- DS Assoc. of Victoria
- DS Assoc. of Western Australia
- Australian Capital Territory DS Assoc.
- DS Assoc. of Queensland
Austria:
Bahrain:
Belgium:
Brazil:
Canada:
- Calgary DS Assoc.
- Canadian Down Syndrome Society
- DS Assoc. of Metropolitan Toronto
- Down Syndrome Research Foundation and Resource Centre
- Newfoundland and Labrador DS Society
- Assoc. du Syndrome de Down de L’estrie (Quebec)
Croatia:
Czech Republic:
Denmark:
Ecuador:
France:
Germany:
Honduras:
Hong Kong:
Iceland:
India:
Ireland:
Italy:
- L’Associazione Italiana Persone Down
- Associazione Genitori Bambini Down
- Centro Bresciano Down
- CE.N.TR.O. 21 — Bologna
- Sindrome di Down
Japan:
- Japan Down Syndrome Network (link broken)
Luxembourg:
- Trisomie 21 Lëtzebuerg a.s.b.l. (in French and German)
Malta:
Maylasia:
- Kiwanis Down Syndrome Centre under construction
Mexico:
Netherlands:
New Zealand:
Nigeria:
Norway:
Phillipines:
Poland:
Puerto Rico:
Romania:
Russia:
- Down Syndrome Assoc. of Russia
- Downside Up (this is a UK charity for Russian children with DS)
Singapore:
Slovakia:
Slovenia:
South Africa:
Spain:
- Down 21: Fundación SÃndrome de Down
- Asociacion Sindrome de Down “Lejeune”
- Fundacio Catalana Sindrome de Down
- La Fundación SÃndrome de Down de Cantabria
Sweden:
Switzerland:
Turkey:
United Kingdom:
- UK Resources for Down Syndrome
- The UPs of Downs
- UK Down’s Syndrome Assoc.
- UK Mosaic Down Syndrome Assoc.
- DS Assoc of Bristol
- Greater Manchester Branch of the DS Assoc.
- Down Syndrome Liverpool
- North East & Cumbria Branch
- Down’s Syndrome Assoc. London Branch
- Oxfordshire Group of the DS Assoc.
- Kingston Special Needs Project
- Inter Care Residential
Uruguay:
Online Magazines and Newsletters
- Down Syndrome Quarterly (a multi-disciplinary journal)
- Disability Solutions
- Down Syndrome Amongst Us
- Ohrenkuss, a German magazine by people with DS
Medical Resources
Medical Descriptions of DS
- A description of Down Syndrome characteristics by Dr. Siegfried M. Pueschel
- Online Mendelian Inheritance in Man (OMIM) Page on DS (a medical description)
General Health Guidelines
- Health Care Guidelines for People with DS
- Spanish Edition of DSMIG Guidelines
- Down Syndrome: Health Issues, from Dr. Len Leshin
Genetics of DS
- Dr. Korenberg’s Chromosome 21 Phenotype Mapping Project
- Online Mendelian Inheritance in Man (OMIM) Gene Map of chromosome 21
- Risk and Recurrence of Down Syndrome by Dr. Paul Benke
- What is Mosaic Down Syndrome? by Carol Strom
- Animations of Meiosis and Fertilization
Specific Medical Topics in DS
- Alzheimer’s in DS by Dr. Ira Lott
- Brain and Tissue Bank for Developmental Disorders
- Center for Motor Behavior in Down Syndrome
- Dental Care in Down Syndrome: A Review of the Literature by Sindoor Desai, DDS
- Down Syndrome & Autistic-Spectrum Disorder (opens pdf file)
- Down’s Syndrome Vision Research Group (Cardiff Univ., UK)
- Down’s Heart Group
- Growth Charts for Children with Down Syndrome
- Hip Instability in Down Syndrome by Kim Voss
- “Talk to Me”: A personal development manual for women and girls with DS and their parents
- My Brother and Me: about Down Syndrome and Alzheimer’s
Other Resources for Parents
- **Stanford’s Center for Research and Treatment of DS**
- African-American and DS
- Austism and Down Syndrome: Dual Diagnosis>
- Breastfeeding a Child with Down Syndrome, by the Nursing Mothers Assoc. of Australia
- Breastfeeding and Down Syndrome, by the La Leche organization
- Communicating Partners, Dr. James McDonald’s program
- Creative Exchange Music Therapy
- Diagnosis: Down Syndrome (a collection of stories for new parents of children with DS)
- Down Syndrome – For New Parents (by The Paul Family)
- Down Syndrome for Family and Friends
- Down Syndrome: A Parent’s Perspecitve by Australian author Fiona Place>
- Have Ya Heard? The Ability of Downs
- How to Write a Letter of Intent or Life Plan
- Love and Learn Tapes for Teaching Reading
- “Me, Hailey”, a website by author Sheri Plucker on being a parent of a child with DS>
- MetLife’s “Division of Estate Planning for Special Kids”
- Music Therapy
- OT Exchange: a site for pediatric Occupational Therapists and parents who utilize OTs
- Parents’ Resource – For new parents (by the Edwards Family)
- Tennis Academy for People with Down Syndrome
- The Upside of Down Syndrome Company
- Trisomy 21 Online Siblings Community
- Welcome to Holland, by Emily P. Kingsley
- Welcoming New Babies, by Pam Wilson
Non-profit Foundations
- Annie Forts’ Up Syndrome Fund, Inc.
- Down Syndrome Research and Treatment Foundation
- Down Syndrome Advocacy Foundation
- Down Syndrome Research Online Advocacy Group
- Foundation 21 (Australia)
- The Karen Gaffney Foundation
- The Lindsey Rae Foundation
- Personal Ponies for Children with Disabilities
- The Possible Dream Foundation
- Trisomy 21 Foundation of Northern New York
- Jimmy Broyden’s DS Foundation
SCHOOLS / EDUCATIONAL COMMUNITIES / CAMPS
- Camphill Soltane – Pennsylvania
- Pathfinder Village – New York
- Green Oaks School – Arlington, TX
- Down Home Ranch – Austin, TX
Other Notable Sites
Adult Artists with DS
- Chris Burke Fan Club Website
- Sujeet Desai: Pianist Extraordinaire
- Michael Jurogue Johnson: a painter and illustrator with DS
- Raymond Hu’s Website: his story and paintings
- Jane Cameron, Sunshine Girl
- Bernadette Resha: Artist, Musician, Model, Magician
Internet Miscellany
- DS International Swimming Organisation
- Afraid to Look Down: about the play by Cullen Douglas, a father of a boy with DS
- Adult Sibs of Individuals with MR/DD (New York City)
- Down Syndrome Web Ring
The Marketplace
- “Beautiful Faces” Calendars and Note Cards
- Ups & Downs – An Anthology: seventeen individual stories written by families of children with DS
- Dolly Downs (from Camp Venture)
- Downi Creations (more dolls)
- Sign Language Rebus Books for Children with Special Needs
- Signing Time! ASL videos for children
- TLC Kids Company: educational materials for children with disabilties
- C-wide: Dolphin Trips
Photographers of Children with Special Needs
- Special Kids Photography
- Chris Burke Fan Club Website
- Sujeet Desai: Pianist Extraordinaire
- Michael Jurogue Johnson: a painter and illustrator with DS
- Raymond Hu’s Website: his story and paintings
- Jane Cameron, Sunshine Girl
- Bernadette Resha: Artist, Musician, Model, Magician
Adult Artists with DS
- Chris Burke Fan Club Website
- Sujeet Desai: Pianist Extraordinaire
- Michael Jurogue Johnson: a painter and illustrator with DS
- Raymond Hu’s Website: his story and paintings
- Jane Cameron, Sunshine Girl
- Bernadette Resha: Artist, Musician, Model, Magician
Internet Miscellany
- DS International Swimming Organisation
- Afraid to Look Down: about the play by Cullen Douglas, a father of a boy with DS
- Adult Sibs of Individuals with MR/DD (New York City)
- Down Syndrome Web Ring
The Marketplace
- “Beautiful Faces” Calendars and Note Cards
- Ups & Downs – An Anthology: seventeen individual stories written by families of children with DS
- Dolly Downs (from Camp Venture)
- Downi Creations (more dolls)
- Sign Language Rebus Books for Children with Special Needs
- Signing Time! ASL videos for children
- TLC Kids Company: educational materials for children with disabilties
- C-wide: Dolphin Trips
Photographers of Children with Special Needs
- Special Kids Photography
- DS International Swimming Organisation
- Afraid to Look Down: about the play by Cullen Douglas, a father of a boy with DS
- Adult Sibs of Individuals with MR/DD (New York City)
- Down Syndrome Web Ring
The Marketplace
- “Beautiful Faces” Calendars and Note Cards
- Ups & Downs – An Anthology: seventeen individual stories written by families of children with DS
- Dolly Downs (from Camp Venture)
- Downi Creations (more dolls)
- Sign Language Rebus Books for Children with Special Needs
- Signing Time! ASL videos for children
- TLC Kids Company: educational materials for children with disabilties
- C-wide: Dolphin Trips
Photographers of Children with Special Needs
Mailing Lists and Newsgroups
Debbie Seaux
Please add our group from Southwest Louisiana to your resource page. I am the founder and proud parent of an 18 yr daughter with DS. The things you said about new parents is what i say i wish i could do. (take away that first year) . God bless you.
Marissa Huth
Please consider adding Raising Special Kids to your list of resources. We are a nonprofit comprehensive parent center serving families raising children with disabilities in Arizona.
Thank you