Newly Diagnosed: If you’ve just received an FA diagnosis and have come across this website, you’ve come to the right place. We’re here to help you understand the diagnosis and what it means to live with FA.
Family Directory: connect with other people with FA and their families. The directory lists FA families in each state and in a number of countries. Only those listed in the directory have access to view it.
Related Organizations: learn about other FA organizations, rare disease groups, and advocacy groups.
International Support: international families may wish to access additional support within their home countries. We can provide contact information for FA support groups around the world
Family Meeting: each year, FA families are invited to spend four days at Camp Sunshine, where they get to spend time with other families, attend medical presentations and support sessions. Children and their siblings participate in fun-filled camp activities.
Meeting for Adults with FA: adults 18+ with FA are invited to attend this meeting each year to network with one another, listen to medical and science updates, and attend support sessions.
Family Support Group: a private Facebook support group allows adults with FA and parents of children with FA to exchange questions and information. An additional private Facebook support group only for adults diagnosed with FA is also available.
Registering with FARF gives you access to educational materials, resources, support services, and community. All information and services are free, and your information is kept confidential.
This group has a wonderful amount of knowledge to share & will send you positive vibes when you lack strength. It’s a wonderful outlet for questions, information, love, and support throughout the journey.