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Carolina Fragile X Project
Focuses on increasing public awareness and understanding of fragile X syndrome, as well as different types of intervention available to affected individuals and their families.
Conquer Fragile X Foundation
Foundation that offers grants for research, also lists open studies for interested families. Accepts monetary donations and is active in lobbying for political initiatives to expand research opportunities.
FRAXA – Fragile X Research Foundation
Another foundation focused on promoting research, it also provides general information about the syndrome and offers publications, links, and contacts. They also accept financial donations and tissue donations for research.
The National Fragile X Foundation
An exceptionally thorough and comprehensive site, and thus a great starting point for parents in search of anything and everything. It includes a unique section on life-planning, which discusses financial planning, employment and community living.
NICHD: Families and Fragile X Syndrome
A nice publication for families produced by the National Institute of Child Health & Human Development, available for free at this website.