Last Updated: Dec 21, 2011
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Recommended Down Syndrome Sites on the
Internet
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Compiled by Len Leshin, MD
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If you do a web search for "Down syndrome" on any of the major search engines, you'll now get millions of websites in return. When I first started this list, my intention was to make it as comprehensive as I could, and with only a few hundred sites in the early 1990s, it used to be easier. With the rapid expansion of the internet since then, however, that goal has become almost impossible. So here are the sites that I feel have the most to offer parents of children with Down syndrome ("DS" for short).
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If any of these links are incorrect or out of date, please let me know. (To quote Chris Gravell: "this is what happens when you go on leave for 3 weeks - all the links have changed when you get back.") Any omissions or errors are my responsibility alone. Also, please let me know if you have any sites to add.
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 Education International
Mosaic Down Syndrome on the Web
SOCIAL NETWORKING SITES
Uno Mas! (Temecula Valley DS Group)
Downsyndrome.com
Dads Appreciating Down Syndrome (D.A.D.S.)
Down Syndrome But Not Out
U.S. LOCAL ORGANIZATIONS
Northeast:
Aim High Resource Center (Albany, NY)
Bringing Up Down Syndrome (Southern NJ)
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
Eastern Penn. Down Syndrome Center
Hudson Valley Down Syndrome Assoc. (NY)
KIIDS (Southern New Jersey)
Massachusetts DS Congress
PODS - Montgomery County (Maryland)
Northern New England DS Congress (Concord) 
Southern Maine DS Family Network
Trisomy 21 of Northern NY
Southeast:
Down Syndrome Assoc. of Atlanta
Down Syndrome Assoc. of Greater Richmond
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 Society of Mobile, AL
Down Syndrome Assoc. of New Orleans
Down Syndrome Assoc. of Roanoke, Virgina
Down Syndrome Assoc. of Virginia Peninsula
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
Lowcountry DS Society (GA)
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)
Western Carolina DS Alliance
Middle:
Central Ohio Down Syndrome Society
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. Illinois)
Down Syndrome Society of Wichita
Kansas City Down Syndrome Guild Assoc.
Miami Valley Down Syndrome Assoc. (Dayton, OH)
National Assoc. for Down Syndrome (Chicago)
Omaha Down Syndrome Parents Network
Oshkosh Down Syndrome Parent Support Group
Riverbend Down Syndrome Parent Support Group (SW Illinois)
SW Chicago Suburban Support Group
Up With Down (Des Moines)
West & Southwest:
Coastal Bend Down Syndrome Advocates (Corpus Christi)
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)
Down Syndrome Organization of Southern Nevada
Down Syndrome Partnership of Tarrant County (Ft. Worth)
Down Syndrome Support Group of the High Desert
Red River Valley DS Society (Northeast Texas, Southeast Oklahoma and southwest Ark) 
Rio Grande Down Syndrome Network (Albuquerque) 
Sharing Down Syndrome Arizona
Southern Arizona Network for DS
Southern New Mexico DS Families
Rocky Mountain & Northwest:
Colorado Springs Down Syndrome Assoc.
Down Syndrome Community (Western Wash.)
Down Syndrome Outreach of Whatcom County (Wash.)
Mile High Down Syndrome Assoc. (Denver area)
Treasure Valley DS Assoc. (Boise)
Upside! (Wash.)
Utah Down Syndrome Foundation
Intercontinental US:
Down Syndrome Ohana of Hawaii 
Hawaii Down Syndrome Congress
Alaska Chapter of the NDSC
INTERNATIONAL SITES
Argentina: Asociacion Down de Avellaneda
Australia:
DS Society of South Australia
DS Assoc. of New South Wales
DS Assoc. of Victoria
DS Assoc. of Western Australia
DS Assoc. of Queensland
DS Assoc. of Tasmania
DS Down Under
Austria: Infoplattform Down-Syndrom Österreich
Belgium:
Tri21
Down Syndroom (Flemish)
Trisomie 21 (French)
Canada:
Calgary DS Assoc.
Canadian Down Syndrome Society
DS Assoc. of Metropolitan Toronto
DS Assoc. of Peterborough
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
Denmark:
Downs Foreningen Hovedstaden
Landsforening Downs Syndrom
Ecuador: Frutos-Integral Attention Center
Europe: European Down Syndrome Association
Germany:
Down syndrome network Germany
Deutschen Down-Syndrom InfoCenter
Honduras: Down Syndrome Foundation
Hungary: Down Alapítvány
Iceland: Félag áhugafólks um Downs-heilkenni
India:
Down Syndrome Federation of India
UDAAN
Ireland:
Down Syndrome Ireland - Main branch
Down Syndrome Ireland - Mayo Branch
Down Syndrome Centre
Italy:
L'Associazione Italiana Persone Down
Centro Bresciano Down
Sindrome di Down
Japan: Japan Down Syndrome Network
Kosova: Down Syndrome Kosova 
Kuwait: Kuwait Down Syndrome
Luxembourg: Trisomie 21 Lëtzebuerg a.s.b.l. (in French and German)
Maylasia:
Kiwanis Down Syndrome Centre
Down Syndrome Malaysia
Mexico: 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
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: Fundacio Catalana Sindrome de Down
Switzerland:
EDSA Schweiz
Insieme - Vereinigung für Kinder mit Down-Syndrom
Association Romande Trisomie 21
Turkey: Down Türkiye 
United Kingdom:
The UPs of Downs
UK Down's Syndrome Assoc.
UK Mosaic Down Syndrome Assoc.
DS Assoc of Bristol
Down Syndrome Liverpool
North East & Cumbria Branch
Down's Syndrome Assoc. London Branch
Oxfordshire Group of the DS Assoc.
Swindon DS Group
Kingston Special Needs Project
Inter Care Residential
ONLINE MAGAZINES AND NEWSLETTERS
Down Syndrome Quarterly (a multi-disciplinary journal)
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
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
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
Center for Motor Behavior in Down Syndrome
Dental Care in Down Syndrome: A Review of the Literature by Sindoor Desai, DDS
Down's Heart Group
Growth Charts for Children with Down Syndrome
"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**
Research Down Syndrome 
A Life Worth Living
Brave Kids
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: Facts and Fiction
Down Syndrome - For New Parents (by The Paul Family)
Down Syndrome: A Parent's Perspecitve by Australian author Fiona Place
Love and Learn Tapes for Teaching Reading
"Me, Hailey", a website by author Sheri Plucker on being a parent of a child with DS>
Music Therapy
OT Exchange: a site for pediatric Occupational Therapists and parents who utilize OTs
Tennis Academy for People with Down Syndrome
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 Advocacy Foundation
Down Syndrome Research and Treatment Foundation
Down Syndrome Research Online Advocacy Group
Foundation 21 (Australia)
Jimmy Broyden's DS Foundation
The Joy of Downs, Inc
The Karen Gaffney Foundation
The Lindsey Rae Foundation
Personal Ponies for Children with Disabilities
The Child King Foundation
The Possible Dream Foundation
Research Down Syndrome Organization
The Share Foundation of Indiana
United Angels Foundation of Utah
SCHOOLS / EDUCATIONAL COMMUNITIES / CAMPS
Camphill Soltane - Penn.
Capmhill Special School - Penn.
Camp Pals - Penn.
Pathfinder Village - New York
Green Oaks School - Arlington, TX
Down Home Ranch - Austin, TX
The Marbridge Foundation - Central Texas
Camp Many Stars - Star Valley, WY
OTHER NOTABLE SITES
Adult Artists with DS
Chris Burke Fan Club Website
Sujeet Desai: Pianist Extraordinaire
Michael Jurogue Johnson: a painter and illustrator
Jane Cameron, Sunshine Girl
Bernadette Resha: Artist, Musician, Model, Magician
Romeu Neto, a Brazilian poet and artist
Blogs by Parents or Sibs of Children with DS
All 4 My Gals
Archie's Room
Beneath the Wings
Big Blueberry Eyes
Blog for Down Syndrome
Cause of our Joy
Chase and More!
Daniel Drinker
Down Syndrome Life
Fearfully and Wonderfully Made
Halfway to Gorgeousness
Lily's Life is Great!
Mom of Many Needs
Pinwheels
Praying for Parker
Welcome to Our House
Widening Circle
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
Down Syndrome Web Ring
The Marketplace
"Beautiful Faces" Calendars and Note Cards
Signing Time! ASL videos for children
TLC Kids Company: educational materials for children with disabilties
C-wide: Dolphin Trips
Specs For Us: Precision Eyewear for Special Children
Mini-Miracles: Special Needs Clothing for Children
Pediatric Treadmills
Photographers of Children with Special Needs
Special Kids Photography
FAMILY AND INDIVIDUAL PAGES
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