Going out in public has always been a way for me to feel connected to the whole. Even if I wasn’t talking to anyone, just being surrounded by other energies and close proximity brought me both joy and the feeling...

One group of people we often think about but don’t often directly address is caregivers. All of you partners, parents, siblings, grandparents, friends or family members, we want you to know how vital you are to this community. We want...

MARCH 13: Due to the ever-evolving impact of the coronavirus pandemic, FARF staff will be working remotely for the next few weeks. While we are equipped with the necessary technology to continue meeting our mission and providing service, this will...

For those patients (and parents!) in peds or reaching a transition, here’s a little encouragement: Transitioning to adult care with a rare disease like FA is a GIFT. Not everyone with our diagnosis gets to adulthood; enjoy this rite of...