Events

Jan 22nd, 2025

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

Mar 11th, 2025

Join Lori Krause for a workshop designed to explore and process “living losses”—non-death-related losses that arise from life transitions, changes, or unmet expectations. Examples of living losses include the loss of identity, health, relationships, careers, or abilities. Participants will gain tools to acknowledge these losses, better understand their emotional impact, and...

Mar 19th, 2025

This virtual meeting is an opportunity for individuals diagnosed with Fanconi Anemia Neurological Syndrome (FANS) and their families to gather, find mutual support for navigating FANS, and hear from leading FANS physician and researcher, Dr. Stella Davies. Dr. Davies is the Director of the Division of Bone Marrow Transplantation and...

Jun 11th, 2025

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

The Latest

News & Events

2025 Research Updates

Research is the answer to one day making FA a treatable, manageable disease. Here, you'll discover the most recent strides in FA research and activities funded by FCF. Every quarter, we'll bring you updates on newly funded grants, ongoing projects, and significant milestones.

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Living With FA, Loving Beyond It: Israel’s Story

Israel endured so much in his short life. But even in the hardest moments, he brought so much light. One of my favorite memories from his transplant journey was how he never went by his real name. The first doctor we saw when he was admitted asked him his name, and Israel replied, “Batman.” From then on, he cycled through names from his favorite movies: Randall, Pascal, and eventually Lewis.

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In Loving Memory of Imroze Marzban Ardeshir

April 15, 1983 – December 27, 2017By Daisy & Marzban Ardeshir The story below was shared by Imroze’s parents, Daisy and Marzban Ardeshir, in remembrance of their daughter’s strength, grace, and enduring spirit. Our second child, Imroze, was diagnosed with...

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