Mar 7, 2008
Down Syndrome E-mail Lists, Newsgroups and Bulletin Boards
Compiled by Dr. Len Leshin
MAILING LISTS / NEWSGROUPS
Down-Syn Listserv / Newsgroup
The granddaddy of them all. Begun by Bill McGarry and is often referred to as "The List" or "The Listserv." You may subscribe to this e-mail list by sending e-mail to: listserv@listserv.nodak.edu and writing: subscribe down-syn <your real name> in the body of the e-mail. The listserv program will automatically obtain your e-mail address from your message.
Upsndowns List
The second mailing list is called the "upsndowns" list and is run by Tim and Cindy Casten. You must be a subscriber to read and post messages. This list is not accessible through newsgroups.
This list is now run through Yahoo groups. To subscribe, first register at http://groups.yahoo.com. Then sign up for the list at http://groups.yahoo.com/group/UpsNDowns. If you have trouble subscribing, contact Cindy Casten at cindysue@upsndowns.org.
DS-Autism
This e-mail list is for families and others interested in supporting children and adults with the dual diagnosis of Down syndrome and autism, autistic spectrum disorders, or Pervasive Development Disorder (PDD).
Subscribe at http://groups.yahoo.com/community/ds-autism.
Downs-Syn-UK List
This is a Downs syndrome discussion forum for individuals from the United Kingdom. To subscribe go to http://listserv.down-syndrome.net/archives/ds-uk.html.
Swedish Down Syndrome List
This list is mainly for communication in Swedish but others are also welcome to join with questions in English but must realise that most communications will be held in Swedish. This can be acessed by sending an e-mail to majordomo@dataphone.se with no subject and the following text in the body : subscribe downsyn
German Down Syndrome List
This is a mailing list in German. To subscribe send e-mail to downsyn@zfn.uni-bremen.de and in the subject line put Down-Syndrom Briefkasten Start
Brazilian Down Syndrome List I
This is a mailing list in Portuguese. Messages in Spanish are also accepted. To subscribe send e-mail to Majordomo@listas.aleph.com.br with the following command in the body of your e-mail message: subscribe downet
(Note: As of 2005, it was a SPAM-heavy list.)
Brazilian Down Syndrome List II
Another mailing list about DS in Portuguese. To subscribe visit: http://www.grupos.com.br/grupos/sindromededown.
Canadian Down Syndrome List
This list is called down-syn-canada. The purpose of this list is enable people to exchange information about Down syndrome as it pertains to the Canadian context. Examples of the type of information that might be requested or discussed include: requests for, and listings of professionals or consultants in specific regions in Canada who deal with people with Down syndrome; educational, legal or public policy issues effecting people with Down syndrome that are specific to Canada (or regions therein); news about tests conducted in Canada that involve or target people with Down syndrome; and descriptions of how people with Down syndrome are depicted in the (Canadian) media. More information about down-syn-canada, including details on subscribing, can be found here.
Swiss Down Syndrome List
This is the "Schweizer Down Syndrom Mailingliste." To subscribe, please send e-mail to ds.mailliste@edsa.ch, in the subject line enter 'SUBSCRIBE'
Hungarian Down Syndrome List
For parents of children with DS in Hungary. To sign up, send e-mail to down-up@uptime.hu
Yahoo / MSN / AOL Groups and Clubs
These are "website communities" that make it easy to set up free e-mail lists or bulletin boards. As a result, these come and go frequently. Here are some of the more popular and long-lasting groups dealing with Down syndrome:
Downs-Heart
"A contact point for families who have a member with Down's Syndrome and associated congenital heart disease. Support and information for those whose child is facing heart surgery, who has had surgery, those whose condition is inoperable, and those families who are bereaved." Go to http://groups.yahoo.com/group/Downs-Heart.
downsyndrome
"a place where parents can get together to discuss all the issues related to Down syndrome. Here you can meet with other parents and learn what other parents are doing for their children with Down syndrome." Go to http://groups.yahoo.com/group/downsyndrome.
down_syndrome
"A list for parents of children with Down Syndrome to brag, talk about concerns, medical problems, schooling,therapy, and so on." Go to http://groups.yahoo.com/group/down_syndrome.
Down Syndrome Assoc. Leadership Forum
"This listserv is for Board members and employees of Down syndrome associations. This listserv will be a forum to share experiences and ideas and to seek advice to better our community." Go to http://health.groups.yahoo.com/group/dsalf/.
Mosaic DS
"A support list for parents (and family members too) whose babies/children/adult children have been diagnosed with Mosaic Down Syndrome." Go to http://groups.yahoo.com/group/MosaicDS.
DownSyndromeParents
"This list is for parents who have children with Down syndrome. Come and share your thoughts and experiences with us." Go to http://groups.yahoo.com/group/DownSyndromeParents.
DS Teens Plus
"A mailing list dedicated to the parents, family members and friends of teens and "olders" born with Down syndrome." Go to http://groups.yahoo.com/group/DS_Teens_Plus.
Single DS parents
"If you are single and raising a child with Down Syndrome - this is the place! We have all the usual single parent stuff, plus the added weight of caring for our special children." Go to http://groups.yahoo.com/group/SingleDSparents.
Multiples-DS
"For families that have multiple births, in which one or more of the children have Down syndrome. Also, we welcome families with more than one child with Down syndrome (adoptive and biological parents, too)." Go to http://groups.yahoo.com/group/Multiples-DS.
Down Syndrome & Leukemia
"A support group designed to discuss issues related to individuals with Down Syndrome who have leukemia." Go to http://health.groups.yahoo.com/group/ds_leukemia/.
Down Syndrome Canadian Parents
"A Canadian Club for parents with children with DS to go to for support and friendships." Go to http://clubs.yahoo.com/clubs/downsyndromecanadianparents
Downsyndrome-Irish
"This is a group for any one with a child who has down syndrome but if you are Irish or have an Irish connection (or even if you don't) you are especially welcome." Go to http://groups.yahoo.com/group/downsyndromeirish
Africans and Downs Syndrome
A support group for African families with Children with DS in UK/US. Go to http://clubs.yahoo.com/clubs/africansanddownssyndrome
Down's Syndrome Angels
"Parents of Down's Syndrome children and other special need children sharing advice, giving support, sharing milestones of our spcial angels." Go to http://groups.aol.com/_cqr/angelswithdowns?mmch_=0
Down Syndrome, A Whole New World
An MSN group with bulletin boards, chats and other information. Go to http://groups.msn.com/DownSyndromeawholenewworld
Families Dealing with DS
An MSN group with bulletin boards, chats and other information. Go to http://groups.msn.com/FamiliesDealingWIthDownSyndrome
Down Syndrome for Everyone
An MSN group with bulletin boards, chats and other information. Go to http://groups.msn.com/downsyndromeforeveryone/homepage.msnw
Les Enfants Tournesols/Un regard sur la Trisomie
An MSN group in French. Go to http://groups.msn.com/LesEnfantsTournesols/home.htm
Trisomie 21, de l'Estrie
Another MSN Group in French. Go to http://groups.msn.com/Trisomie21/home.htm.
You will find several smaller lists by doing a search for "Down syndrome" on Yahoo's, MSN's or AOL's groups websites.
OTHER BULLETIN BOARDS / FORUMS
AssociationsNat'l Assoc. for DS Boards
Community Websites
Parents' Place BB
HealthBoards.com BB
Trisomy 21 Online Siblings Community
Personal
Down Syndrome/Trisomy 21 Board
Down Syndrome Hudson Valley Forum (by the Arnold Corporation)
Uno Mas Boards (plus a chat room)
AOL also has DS bulletin board areas:
- go to Keyword OLP (or go to the OnLinePsych area)
- go to Keyword DisAbilities
- go to Keyword Parent Soup > Message Boards > Parenting Challenges > Down syndrome
Other Notable Email Lists
These lists don't deal specifically with Down syndrome, but may be of interest to parents of children with Down syndrome.
Our-Kids
The Our-Kids list consist of over 800 people representing children of varying diagnosis; everything from indefinite developmental delays and sensory integration problems, to cerebral palsy, to rare genetic disorders. For discussing accomplishments, defeats, medical and educational problems, and many other topics. Go to http://www.our-kids.org to subscribe.