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
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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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.