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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.

Fanconi Anemia Research Fund and NORD Launch Natural History Study of Fanconi Anemia

Research study is open to participants worldwide to advance understanding and treatments for the rare disease Fanconi anemia, diagnosed and confirmed through a combination of clinical findings and genetic analysis Eugene, OR, September 2019 — Today the Fanconi Anemia Research Fund...

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A gene therapy based clinical trial for Fanconi anemia patients offers its first successful results

*The following is a press release about the recent publication on FA gene therapy in the journal Nature Medicine. This press release was provided by the Center for Energy, Environment and Technology (CIEMAT), the Center for Biomedical Network Research on...

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Introducing the FAdult Council

In late 2017, for the first time ever, there were more adults living with Fanconi anemia than children living with FA (according to FARF’s registry). This reflects an emerging population of adults living with FA that was not present even...

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Genotype-phenotype associations in Fanconi anemia: A literature review

FA publication spotlight In the September 2019 issue of Blood Reviews, FA researchers published a paper reviewing the literature on Fanconi anemia. We asked the authors to provide a summary. Thank you, Dr. Blanche Alter. Authors on the paper: Fiesco-Roa MO,...

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How Our Family Channeled Grief Into Hope

Our Mighty Mouse Well before her diagnosis of Fanconi anemia (FA), our daughter Norah was a model in resiliency for us. Born at just five pounds and three ounces, she had the strongest heartbeat on the hospital floor, surprising us...

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The Family Meeting in Photos

Every summer, families affected by FA come together at Camp Sunshine in Casco, Maine for five days. The Family Retreat (or Family Camp) is a special event that allows families to hear from expert FA researchers and physicians, to attend support groups...

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