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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Stella Davies
Board Member | MBBS, PhD, MRCP
As director of the Division of Bone Marrow Transplantation and Immune Deficiency at the Cincinnati Children’s Hospital, Dr. Davies has helped pioneer significant advances in bone marrow transplantation to improve survival rates and reduce toxicity. She has led efforts to sustain and improve an already-strong clinical center of excellence for the care of Fanconi patients and their families. She has also played a key role at Cincinnati in fostering and supporting strong clinical and basic science focused on Fanconi anemia. She is an active and vocal participant in the FA scientific community and brings her intellect, energy, and enthusiasm to the fight against Fanconi anemia.
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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.
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.