Since 1991, the FA Family Retreat has been a tradition that surprises, supports, and uplifts FA families worldwide. Whether families travel from within the United States or across the globe, the retreat offers connection, educational sessions, resources, expert consultations, and...
Events
A common phrase in the FA community is "I'm just waiting for the other shoe to drop." Living with this amount of uncertainty can take a toll. Join fellow FA caregiver, Allison Breininger, for a group discussion about what it's like living with the unknown and ways we can find...
We are delighted to invite you to the upcoming FA Family Retreat, taking place at The Painted Turtle from August 1-5, 2024. 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...
Come meet Lori Krause, FCF Bereavement Group facilitator, certified life coach focusing on grief and loss, and end-of-life doula with experience facilitating groups in the rare disease space. In this virtual session, she will discuss some of the most common myths about grief and share tips on how to navigate...
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...
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News & Events
Katherine (middle) with 2023's recipient Ana Tabar (left) and FCF CEO Isis Sroka (right) The De Los Santos family first experienced the complexities of Fanconi anemia as they endured the devastating loss of their daughter, Gracie, who passed away from...
It took me weeks to come to terms with the fact that there were no easy answers. I couldn't change the past or the diagnosis, so I focused on educating myself and becoming Tinslee's biggest advocate. We underwent all the necessary tests, scans, and procedures, and spent a year going in for lab work and check-ups.