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.
Directory
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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I am a poet, a writer, and a storyteller. I’m also a student, and an older brother to a young man with FA and special needs. I’m a DACA recipient. I’m here. I’m present. I am more than my current mental state, and more than this diagnosis.
People with rare diseases like FA often rely on a combination of healthcare programs and insurance coverage. Any change that reduces access to care or increases out-of-pocket costs can have real-world consequences for our community.