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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Akiko Shimamura
Bone Marrow Failure and Myelodysplastic Syndrome Program | MD, PhD | Boston, USA
Dr. Shimamura directs the Bone Marrow Failure and Myelodysplastic Syndrome Program of the Dana Farber/Boston Children’s Cancer and Blood Disorders Center. Her research focuses on translational studies spanning clinical through basic science investigations to understand the genetic and molecular basis of bone marrow failure, MDS, and leukemia predisposition with the goal of developing more effective and less toxic treatments. Dr. Shimamura had previously directed the Bone Marrow Failure Clinic at Boston Children’s Hospital and then at Seattle Children’s Hospital before returning to Boston Children’s Hospital in the fall of 2015.
Dr. Shimamura has mentored numerous students and post-doctoral fellows who have moved on to careers in academics, medicine, or the biotechnology industry.
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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.