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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
- 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
- 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
- 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,"
- Unknown Disorders
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.
- Just for Parents
- Rare Disorders
- Specific Disorders
- Resources in your state
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