Events

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

Jun 21st, 2025

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...

Sep 25th, 2025

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...

The Latest

News & Events

From Intuition to Action: Advocacy and Hope with FA

By Kelly McKenna My name is Kelly McKenna, and I’m a single mom to two amazing kids. One of them is an eight-year-old boy who has Fanconi anemia (FA). Logan’s medical journey started during my pregnancy at the 20-week anatomy...

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Collaborating for Progress: A Parent’s Journey with FA and Advocacy

By Sarah Borden Our lives changed forever the day we learned our son Eli was diagnosed with Fanconi anemia. Just days earlier, we had celebrated his fourth birthday with family and friends, blissfully unaware of the journey ahead. When faced...

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It Takes a Village to Save a Life: Katherine’s Story

“If I had waited another six months, my story wouldn’t be the same.” Katherine was born into a world shaped by loss. Her older sister, Gracie, was diagnosed with Fanconi anemia (FA) shortly after the family moved to the United...

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