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.
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,” and more.
“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.