Resources for Families

These organizations, programs, and groups provide resources for families like yours to find support, information, and a sense of community.

Note: These links are being provided for your information only.  Our Fragile X World is not responsible for the accuracy, legality, or content for these external sites or links. If you have questions about the content on one of these external sites, contact the site administrators.

External link National Fragile X Foundation

The National Fragile X Foundation is a nonprofit organization that unites the fragile X community to enrich lives through educational and emotional support, promote public and professional awareness, and advance research toward improved treatments and a cure for fragile X syndrome.

External link FRAXA Research Foundation

FRAXA Research Foundation is a non-profit organization that provides support for individuals affected by fragile X syndrome. The foundation is also committed to finding effective treatments and a cure for fragile X.

External link NFXF Community Support Network (CSN)

The CSN is the national volunteer program of the NFXF, composed of groups typically organized and run by parent volunteers. The CSN provides emotional and educational support to families and individuals living with fragile X. The CSN groups organize events that offer support and build awareness for fragile X in their local communities.

External link Fragile X Groups on Facebook

Connect with others affected by fragile X syndrome on social media. Please note that many of these are closed groups that you may need to request permission to join.

External link Center for Parent Information and Resources

CPIR serves as a central resource, providing information and products to the community of Parent Training Information (PTI) Centers and the Community Parent Resource Centers (CPRCs) so that they can focus their efforts on serving families of children with disabilities.

External link Autism Speaks

Autism Speaks was founded in February 2005 by Bob and Suzanne Wright, grandparents of a child with autism. Their longtime friend Bernie Marcus donated $25 million to help launch the organization. Since then, Autism Speaks has grown into the world's leading autism science and advocacy organization, dedicated to funding research into the causes, prevention, treatments, and a cure for autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families.

External link The Arc

The Arc is the largest organization in the United States that is solely devoted to improving the lives of all children and adults with cognitive, intellectual, and developmental disabilities. The organization offers support to families affected by these disabilities and fosters research and educational programs on the prevention of mental retardation. It provides a wide variety of educational materials for parents, teachers, health care professionals, and others. Many materials are available in Spanish.

External link The Mighty

The Mighty publishes real stories by real people facing real challenges of disability, disease, and mental illness. The site is a safe platform for the community to tell their stories, connect with others, and raise support for the causes they believe in. The Mighty has also partnered with over 100 nonprofit allies to deliver excellent resources to the community.