Links to other web sites, mainly Down's syndrome

Pooling Local Information, Cooperating & enriching a Web Site for the dsOK members

Let us help ourselves ! Major web sites cover important broad issues and organisations with wide coverage. We parents & professionals also need information of local nature e.g. Other small self-helf groups in our town, county, what our local borough council is upto ( good or bad, for our children), the local health food shop stocking low sodium bacon, etc. etc. which will come only from local parents & professionals.

We would like to receive such info and hold it on our web site for all to share. It can go in the links below or on our embryonic page of local info or a suitable other site. Some of our neighbouring DSA affiliates and other organisations are planning their own "local interest" web sites like ours. They have shown interest in cooperating to gather info from the members and make it available to all using the power of the web to share. SO, If you come across any good information useful for South East England parents ( or even wider) Please send it to us. SOW & YE shall REAP ! If you wish there was a web site with a particular info but there isn't one yet, send in the idea. Perhaps we could launch a campaign through newsletter or word of mouth to our subgroups and mums & dads grapevine & trawl it. There are a lot us in and around London !
To state the obvious,
the web never got a single useful word on it unless someone wrote it or quoted from a source !
Let us start

digging & looking

and

asking !

Sites with UK Flavour _________| Top, index |_________| Other Pages |_________
( Many thanks to Chris Gravell & Ian Stutt for help in drafting this list)

United Kingdom organisations for people concerned with Down's
( Maintained by parents: Chris Gravell & friends. Very useful, covers education, health, social services / benefits, voluntary help & more. Also links to non-UK )

Down's Syndrome Association DSA ( Campaigns, literature, services info & more )
covers England Wales, N. Ireland
Other DSA affiliates, erstwhile Branches, groups with web sites: see below. Also check DSA site for links.

"Just Kids" New colour version ! See the extract, Get the printed book ! Heartwarming pictures & stories of children with DS & families.
DSA affiliates & erstwhile branches:-
_|_ Greater Manchester (GMDSA) _|_ Liverpool group www.ds-liverpool.org.uk _|_
Central, north London branch _|_ North West Thames group _|_ Margate-Thanet Road group
Group in Calderdale, www.calderdaledsa.org _|_ North East (England) & Cumbria Branch _|_ Bristol branch
Lincolnshire branch (see their Book Reviews page & info links)

Down's Syndrome Scotland
( several good hints & tips, many stories, interesting for southerners too )

DownsEd ( best education info, recommended literature, computer games, toys, courses on many aspects) run by Down Syndrome Educational Trust - Sarah Duffen Centre, Portsmouth . Printed coloured catalogue available; request DownsEd

Inclusion in Education. Official information http://www.doh.gov.uk/london/learningdisabilities/ & Parents' group www.parentsforinclusion.org

Self-help guide to the Special Educational Needs Tribunal by IPSEA www.ipsea.org.uk/sentahead.htm

Downs Heart group UK http://www.Downs-Heart.Downsnet.org/

Health Alert at www.intellectualdisability.info covers medical matters relating to Learning Disabilities. Website is jointly managed by the Down's Syndrome Association and St. George's Medical School funded by the Department of Health and GUS Charitable Trust.

Medical Engineering Research Unit. Provides accessability aids (www.meru.co.uk)
Down's Syndrome Research Foundation Ltd Targeted nutritional intervention & other topics

Values in Action Charity to enable people with learning difficulties to take dicisions affecting their lives. Contact: VIA 0207 729 5436

Kingston Special Needs Project
A Special Needs Group led by parents in the Kingston upon Thames area. www.kingstonspecialneedsproject.org.uk

Computer Software, games suitable for people with learning difficulties PLEASE SUGGEST
See DownsEd and printed catalogue for recommended educational/games software

TobyHomes http:/ www.tobyhomes.freeserve.co.uk Alternative housing; includes a section in symbols for people with limited literacy skills.

non-UK Sites, mostly USA _________| Top, index |_________| Other Pages |_________

National Down Syndrome Society

DOWN SYNDROME QUARTERLY

National Association for Down Syndrome

Down Syndrome Sites on the Internet (Compiled by Dr. Len Leshin) ( Very strong on medical information, lot else too)
Down Syndrome WWW Page

Down Syn On-Line

San Francisco Bay Area Down Syndrome Page

Down Syndrome Association of Metropolitan Toronto

March of Dimes Birth Defects Foundation

Information on "Study-group Down syndrome e.V."

The Riverbend Down Syndrome Parent Support Group (Very comprehensive site)

Mailing lists for DS . _________| Top, index |_________| Other Pages |_________

Mailing lists are e-mail based discussion groups. If you're a member of one, you can send a message to the list address, and it's then sent to all the other members on the list. Other members can reply directly to you or, if it's of general interest, to the whole list. The lists described here are populated largely by parents or close relatives of people with DS, although there are professionals (some of whom are also parents) on the lists, specially on Down-syn list.

UK Downs syndrome e-mail list
For informal support, discussion and information within the UK via e-mail, subscribe to the ind-downs-syn-uk-list. This is a relatively young and quiet e-mail list for UK topics and people and those interested in them.
For detailed up to date instructions click here . How to subscribe, in brief, ?

To subscribe, send email to ind-downs-syn-uk-list-request@open.ac.uk with the following text in the first line of the message
subscribe [your e-mail address]
for example: subscribe joeblogg@wonder.co.uk

Down-syn listserv/newsgroup

This is the oldest and most international e-mail list for DS, and probably has the most subscribers. It's therefore quite busy.

To subscribe, send an email to listserv@listserv.nodak.edu

with following text as first line of the message

subscribe down-syn [your name]
for example: subscribe down-syn Elizabeth

If you don't want to subscribe to this list, you can still read messages and post to it because it is also the newsgroup 'bit.listserv.down-syn'.

Downs Heart Group UK mailing list
A new list with a small but supportive & increasingly active membership.
You can join by going to : http://www.onelist.com/subscribe/Downs-Heart
Their own web site is http://www.Downs-Heart.Downsnet.org/

Down's Syndrome Research Foundation (UK) mailing list
This is a new list but growing with DSRF supporters.
You can join by going to : http://www.onelist.com/subscribe/DSRF

Teenagers & young adults: Down syndrome mailing list DS_Teens_Plus
International list, mainly North American, quite active ( can join for "digest form")
You can join by going to : http://www.onelist.com/subscribe/DS_Teens_Plus

Mailing list /forum for parents. : Our Kids
A support group for parents, caregivers and others who are working with children with physical and/or mental disabilities and delays. Website & access to mailing list : www.our-kids.org/

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