|
Web Site
|
Description
|
Address Link
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| Rainbows Down Under |
This is Karen Schuler's page, the "list
mum" who created the wonderful Trisomy Families Listserv (a shared email
"community" inhabited by over 100 families). It contains lots of great
info on trisomies of every kind, complete with specialized bulletin boards.
A superb resource. |
http://members.optushome.com.au/karens/ |
| SOFT Homepage |
The Support Organization for Trisomy
18, 13 and Related Disorders. This is a great organization which provides
lots of advice and assistance to the families of Trisomy children. They
were a godsend, especially in the days following Kelli's birth. |
http://www.trisomy.org/index.html |
| The Chromosome 18 Registry & Research Society |
Another great resource. Although this
organization is primarily focused on Trisomy 18, their bulletin boards
(which unfortunately have been discontinued) were another wonderful source
of information, support, and encouragement. |
http://www.chromosome18.org/ |
| NORD Home Page |
The National Organization for Rare
Disorders. A very useful site. Home to all the "orphan" diseases and syndromes. |
http://www.rarediseases.org/ |
