Apr 24, 2008
Recommended
Down Syndrome Sites
on the
Internet
Compiled by Len Leshin, MD
Disclaimer: Many of these sites contain medical information. My linking to such a site does not imply my endorsement of such medical (or other) advice. As always, caveat lector: "let the reader beware."
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NATIONAL ORGANIZATIONS
National Down Syndrome Congress
National Down Syndrome Society
International Mosaic Down Syndrome Assoc.
COMPREHENSIVE WEB SITES
(These offer a lot of information on varying topics)
Riverbend Down Syndrome Parent Support Group
Down Syndrome Information Network
Down Syndrome Educational Trust
Sara G's "Being Into Down Syndrome" Page
Uno Mas! (Temecula Valley DS Group)
Mosaic Down Syndrome on the Web
U.S. LOCAL ORGANIZATIONS
Aim High Resource Center (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
DS Connection of Anne Arundel County (MD)
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 Assoc. 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)
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 Tulsa
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:
DS Action (San Diego)
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 Assoc. of San Diego
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
Southern New Mexico DS Families
Rocky Mountain & Northwest:
Colorado Springs Down Syndrome Assoc.
Down Syndrome Outreach of Whatcom County (Wash.)
Mile High Down Syndrome Assoc. (Denver area)
Treasure Valley DS Assoc. (Boise)
Upside! (Wash.)
Uptown Downs of Salt Lake City
Up With Down Assoc. (Utah County)
Utah Down Syndrome Foundation
Intercontinental US:
Hawaii Down Syndrome Congress
Alaska Chapter of the NDSC
INTERNATIONAL SITES
Argentina:
Asociacion Down de Avellaneda
Asociación Síndrome de Down de la República 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
DS Assoc. of Tasmania
Austria: Infoplattform Down-Syndrom Österreich
Bahrain: Bahrain Down Syndrome Society
Belgium: Tri21
Brazil: Fundacao Sindrome de Down
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: Down Syndrom Centar Pula
Czech Republic: Spolecnost Downova syndromu
Assoc. of Parents and Children with DS
Denmark:
Forældre til mongolbørn i København
Landsforening Downs Syndrom
Ecuador: Frutos-Integral Attention Center
Europe: European Down Syndrome Association
Egypt: Down Syndrome Egypt Forum
France: F.A.I.T 21 et G.E.I.S.T 21
Germany:
Down syndrome network Germany
Deutschen Down-Syndrom InfoCenter
Honduras: Down Syndrome Foundation
Hong Kong: Down Syndrome Association
Hungary: Down Alapítvány
Iceland: Félag áhugafólks um Downs-heilkenni
India: Down Syndrome Federation of India
Ireland:
Down Syndrome Ireland - Main branch
Down Syndrome Ireland - Mayo Branch
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
Kuwait: Kuwait Down Syndrome
Luxembourg: Trisomie 21 Lëtzebuerg a.s.b.l. (in French and German)
Malta: Down Syndrome Assoc. of Malta
Maylasia: Kiwanis Down Syndrome Centre under construction
Mexico:
Instituto Irapuatense Down, A.C.
Fundación John Langdon Down, A.C.
Netherlands: Stichting Down's Syndroom
New Zealand: New Zealand DS Assoc.
Nigeria: Down Syndrome Association of Nigeria
Norway:
Downsnett Norge
Marihøna
Phillipines: Down Syndrome Assoc. of the Philippines
Poland: Bardziej Kochani
Puerto Rico: Fundación Síndrome Down
Romania: Sindrom Down
Russia:
Down Syndrome Assoc. of Russia
Downside Up (this is a UK charity for Russian children with DS)
Saudi Arabia: Gulf Kids
Singapore: Singapore Down Syndrome Assoc.
Slovakia: Spolocnost' Downovho syndrómu na Slovensku
Slovenia: Sekcija za Downov Sindrom
South Africa: Down Syndrome South Africa
Spain:
Down 21: Fundación Síndrome de Down
Asociacion Sindrome de Down "Lejeune"
Fundacio Catalana Sindrome de Down
La Fundación Síndrome de Down de Cantabria
Sweden: Downs Syndrom Sverige
Switzerland:
EDSA Schweiz
Insieme - Vereinigung für Kinder mit Down-Syndrom
Association Romande Trisomie 21
Turkey: Down sendromu Dayanisma Grubu
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: La Asociacion Down del 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
Aging and its consequences for People with Down's Syndrome (opens pdf file)
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 MISC. RESOURCES FOR PARENTS
**Stanford's Center for Research and Treatment of DS**
African-American with 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
Anna's Angels Foundation
Annie Forts' Up Syndrome Fund, Inc.
Down Syndrome Research and Treatment Foundation
(includes the Adopt a Mouse for DS program)
Down Syndrome Advocacy Foundation
Down Syndrome International
Down Syndrome Research Online Advocacy Group
Foundation 21 (Australia)
Jimmy Broyden's DS Foundation
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
SCHOOLS / EDUCATIONAL COMMUNITIES / CAMPS
Camphill Soltane - Pennsylvania
Camp Pals - Pennsylvania
Pathfinder Village - New York
Green Oaks School - Arlington, TX
Down Home Ranch - Austin, TX
The Marbridge Foundation - Central Texas
OTHER NOTABLE SITES
Adult Artists with DS
Chris Burke Fan Club Website
Sujeet Desai: Pianist Extraordinaire
Michael Jurogue Johnson: a painter and illustrator
Raymond Hu's Website: his story and paintings
Jane Cameron, Sunshine Girl
Bernadette Resha: Artist, Musician, Model, Magician
Romeu Neto, a Brazilian poet and artist
Blogs by Parents of Children with DS
All 4 My Gals
Archie's Room
Big Blueberry Eyes
Blog for Down Syndrome
Director's Blog for Creating Solutions
Down Syndrome Life
Imperfect Christian
Pinwheels
Praying for Parker
Other Internet Miscellany
Dance 21 - Dance group for children with DS and their siblings (Essex, UK)
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
Shifting Perspectives: 2006 Calendar
Photographers of Children with Special Needs
Special Kids Photography
Homages, Memorials and Recollections
Mountain View Elementary School's DS Site
FAMILY AND INDIVIDUAL PAGES
MAILING LISTS/NEWSGROUPS
has been moved to http://www.ds-health.com/lists.htm