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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Sam Volchenboum
MD, PhD
Samuel L. Volchenboum, MD, PhD, MS, is an expert in pediatric cancers and blood disorders. He has a special interest in treating children with neuroblastoma, a tumor of the sympathetic nervous system.
In addition to caring for patients, Dr. Volchenboum studies ways to harness computers to enable research and foster innovation using large data sets. He directs the development of the International Neuroblastoma Risk Group Database project, which connects international patient data with external information such as genomic data and tissue availability. The Center he runs provides computational support for the Biological Sciences Division at the University of Chicago, including high-performance computing, applications development, bioinformatics, and access to the clinical research data warehouse.
FA Research Projects
| Year | Project |
|---|---|
| 2023 | Building a Fanconi Anemia Data Commons |
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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.