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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.

Our Wild Child, Our Rockstar: Annzie’s Story

When Annzie was six, what started as a routine well visit turned our world upside down. She had always been small for her age, but that visit revealed more: recurring infections and low platelet counts that led to urgent bloodwork. We were referred to hematology, and that began our FA journey.

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My Unexpected Journey With FA

I am a poet, a writer, and a storyteller. I’m also a student, and an older brother to a young man with FA and special needs. I’m a DACA recipient. I’m here. I’m present. I am more than my current mental state, and more than this diagnosis.

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Recent Changes to U.S. Healthcare Policy and What They Could Mean for the FA Community

People with rare diseases like FA often rely on a combination of healthcare programs and insurance coverage. Any change that reduces access to care or increases out-of-pocket costs can have real-world consequences for our community.

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Behind the Research with Meng Wang

In this edition of our Behind the Research series, we’re excited to introduce Dr. Meng Wang, a physician-scientist at Cornell University whose work is shedding light on a little-known but powerful driver of DNA damage in Fanconi anemia: formaldehyde. Dr....

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What Families Told Us: A Deeper Look at Life with Fanconi Anemia (FA)

Everything we do at the Fanconi Cancer Foundation (FCF) starts with the individual, because understanding the lived experience of FA is essential to improving care, advancing research, and strengthening support. As gene therapy and other promising treatments move from clinical...

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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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