News

Why We Need a Real Cure 

By Cecilia Córdoba, mother of Agustina Milagros Kaucic When my daughter Agustina was 2 and a half years old, our lives changed forever. It was very difficult to reach a diagnosis. And when we finally received it, it was devastating....

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The FA Memorial Wall: A Space to Remember

The children and adults with FA are why we’re all here. They are the reason for the countless hours spent in the lab, the energy poured into fundraisers, the conversations we have with anyone willing to listen, and the reason...

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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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