Naomi with her brother and cell donor It’s just a stomach virus… June 2021 was a turning point for our family that we never saw coming. Naomi had just turned seven years old. She was struggling with stomach issues for...
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Living with FA as an adult One way I describe my life living with FA is this: it’s like being picked last for a sport or a group project. It’s that feeling of dread and anxiety and hurt. It’s annoyance...
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Name: Sharon A. Savage, MD Institution: Clinical Genetics Branch, Division of Cancer Epidemiology and Genetics, National Cancer Institute, National Institutes of Health, Bethesda, MD, USA. Area of expertise: Pediatric hematology-oncology, genetics, cancer predisposition syndromes, inherited bone marrow failure syndromes My work: ...
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Stephanie, Brandon, and Raymond The early years Hi, my name is Stephanie and my 13-year-old son, Brandon, was diagnosed with Fanconi anemia (FA) at age four. After learning more about the signs and symptoms of FA, we knew Brandon had...
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The stats: Name: Wayne Crismani Institution: St Vincent’s Institute of Medical Research, Victoria, Australia Area of expertise: DNA repair and recombination My work: I am a laboratory scientist and work mostly in discovery research. I run the DNA Repair and...
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FARF continues to grow the support we provide caregivers, including in how to return to in-person events. During the recent Retreat for Adults with FA, one of the ways we sought to help caregivers feel seen and important was through partnering...
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