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- These
sites provide services that help "match" parents of
children with rare disorders or parents who have specialized
concerns about their children.
-
Alliance of Genetic Support
Groups
- The Alliance
is "a national coalition of consumers, professionals and
genetic support groups to voice the common concerns of children,
adults and families living with, and at risk for, genetic conditions."
You can search its online member directory to find support groups
for a wide variety of genetic disorders.
-
MUMS: National Parent-to-Parent
Network
- This organization
helps parents who have a child with a rare diagnosis make connections
with other parents in similar situations. An extensive list of
diagnoses of the children of families who are registered with
MUMS is included on the web site
-
Parent-to-Parent
Web Board
- Part of
the extensive "Family Village" web site, these message
boards are intended for parents of children with disabilities
and adults with disabilities who would like to talk with someone
else who has "been there." The boards include "Same
Diagnosis," "Specific Procedure," "Location,"
and more.
-
Unknown Disorders
- "Devoted
to those people and their families who suffer from unknown and
rare disorders," this web site contains "case files"
of people seeking information or suggestions regarding their
disorders, links, and related information. Note: We encountered
constant server errors when we last checked this site in March
2000, and suspect it is no longer viable.
-
Related
subjects:
Just for Parents
Rare Disorders
Specific Disorders
Resources in your state
-
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