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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.

Ryan’s Story: The Impact of Research, Support, and Community

When Ryan was diagnosed with Fanconi anemia (FA) at 18 months old, it was devastating. There were so many unknowns, and trying to gather information online was both frustrating and scary. When we found the Fanconi Cancer Foundation (FCF) and...

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Living with Faith and Possibility

For our family, living with FA means living with faith. We see Liam as a normal, healthy child who continues to grow and surprise us. At the same time, we know there are real challenges.

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Speaking Up for Rare Disease Communities

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.

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A Part of My Life, But Not Who I Am

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...

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Walking Beside My Daughter Through Fanconi Anemia

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.

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Tara Fought FANS with Grace and Courage; She Finished the Race

Fear and sadness are embedded with Fanconi anemia (FA), yet I have always tried to have a hopeful tone to my essays thinking of the effect on the families who read it. This one is no different. I lost my gutsy 24-year-old daughter Tara in September. She was created by God for purpose. I always told her she brought out the best in people.

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