Advocacy efforts play an essential role in building stronger systems of care for rare diseases. By elevating the experiences of families and engaging policymakers, organizations such as the Ivan & Joan Foundation are helping move rare disease awareness and care forward in their communities.
This Is Us
In this short video, you’ll hear from individuals with FA, caregivers, scientists, and advocates who are shaping a future full of discovery, connection, and hope. We fund research, support those living with FA, and collaborate with the world’s leading scientists and clinicians to move from rare disease to real impact.