When Ryan was diagnosed with Fanconi anemia (FA) at 18 months old, it was devastating. There were so many unknowns, and trying to gather information online was both frustrating and scary. When we found the Fanconi Cancer Foundation (FCF) and...
Events
Annual Family Retreat
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 benefit from support groups aiding in coping with the disease, voluntary participation in FA research projects, and the chance to connect with other families impacted by FA.
Event Details:
- Dates:
June 21 – 25, 2025 - Check-in:
Saturday, June 21 - Check-out:
Wednesday, June 25
Registration is open now on the Painted Turtle website. All family applications must be completed by May 1.
Event: Meetings
Annual Family Retreat
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For our family, living with FA means living with faith. We see Liam as a normal, healthy child who continues to grow and surprise us. At the same time, we know there are real challenges.
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.