Last Updated:
July 2, 2008

Recommended
Down Syndrome Sites
on the Internet

Compiled by Len Leshin, MD

If you do a web search for "Down syndrome" on any of the major search engines, you'll now get thousands 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).

If any of these links are incorrect or out of date, please let me know.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."

Categories
National Organizations Comprehensive Web Sites United States Local Organizations International Web Sites Online Magazines and Newsletters Medical Resources	Other Resources for Parents Non-Profit Foundations Educational Communities Other Notable Sites dealing with DS Family and Individual Home Pages Mailing Lists and Bulletin Boards

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
Down Syndrome Education - USA

Sara G's "Being Into Down Syndrome" Page
Uno Mas! (Temecula Valley DS Group)
Mosaic Down Syndrome on the Web

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
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 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 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
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)
Western Carolina DS Alliance

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

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)
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: Svenska Downföreningen

Switzerland:
     EDSA Schweiz
     Insieme - Vereinigung für Kinder mit Down-Syndrom
     Association Romande Trisomie 21
Turkey: Down sendromu Dayanisma Grubu
United Kingdom:
     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
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
Dr. Korenberg's Chromosome 21 Phenotype Mapping Project
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 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>
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
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.
(includes the Adopt a Mouse for DS program)
Down Syndrome Advocacy Foundation
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
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
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
The Special Needs Store

Specs For Us: Precision Eyewear for Special Children

Mini-Miracles: Special Needs Clothing for Children

Photographers of Children with Special Needs
Special Kids Photography

Homages, Memorials and Recollections
Mountain View Elementary School's DS Site