Research is the answer to one day making FA a treatable, manageable disease. Here, you'll discover the most recent strides in FA research and activities funded by FCF. Every quarter, we'll bring you updates on newly funded grants, ongoing projects, and significant milestones.
Events
Retreat for Adults with FA
The Retreat for Adults with FA takes place every fall in a different city. It’s an opportunity for individuals with FA ages 18+ to meet other adults with FA, learn about medical and research updates, attend support sessions, and participate in voluntary research studies. We are excited to continue providing education and support sessions for caregivers.
This retreat is held in conjunction with our annual Scientific Symposium. Attendees from both meetings share meals together, including the annual banquet dinner. Adult Retreat attendees are welcome to attend Symposium sessions as well.
Event: Meetings
Retreat for Adults with FA
The Latest
News & Events


I am a poet, a writer, and a storyteller. I’m also a student, and an older brother to a young man with FA and special needs. I’m a DACA recipient. I’m here. I’m present. I am more than my current mental state, and more than this diagnosis.

People with rare diseases like FA often rely on a combination of healthcare programs and insurance coverage. Any change that reduces access to care or increases out-of-pocket costs can have real-world consequences for our community.