Support Services

Online Support Groups
Join a private Facebook support group that 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.

Virtual Events to Learn and Connect
FARF hosts a series of virtual events throughout the year to learn about specific FA-related topics and to connect with other FA families. Educational events are recorded and shared following the event.

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.

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.

Award for Adults with FA
Named for two adults with FA (and former FARF board members), this $5,000 annual award is available to adults with FA who are working toward their and striving to make a difference in their communities.


Sign up as an Individual with FA or an FA Family

Be a part of our network of family education & support services

Signing up 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.

—FA Parent