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.
Events
We are delighted to invite you to the upcoming FA Family Retreat, taking place at The Painted Turtle from June 21-25, 2025. The Family Retreat offers a unique opportunity for families registered with us to participate in presentations by leading researchers and physicians specializing in Fanconi anemia (FA). Attendees will...
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...
This virtual meeting is an opportunity for individuals diagnosed with Fanconi Anemia Neurological Syndrome (FANS) and their families to gather, share experiences, and find mutual support for navigating FANS. Registration is required and participants must speak English as interpretation is not available. Time: 5:00 – 6:30 pm Pacific Time
We recognize the holiday season can be difficult amidst grief, whether caused by the loss of a loved one, anticipatory grief, or living losses. Join Lori Krause for this workshop where participants will acknowledge and validate their emotions, then discuss practical tools to cope with grief during the holidays. 5:00...
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My name is Kambri, and I’m 17 years old. I was diagnosed with Fanconi anemia when I was five. Before my diagnosis, I just didn’t feel good for a while. I had frequent nosebleeds, bruised easily, and was tired a...
What I hope for most is a cure. And until then, I hope for Paige and others with FA to live lives as close to normal as possible, filled with opportunity, independence, and happiness.