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.
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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My name is Kambri, and I’m 17 years old. I was diagnosed with Fanconi anemia when I was five. Before my diagnosis, I just didn’t feel good for a while. I had frequent nosebleeds, bruised easily, and was tired a...
What I hope for most is a cure. And until then, I hope for Paige and others with FA to live lives as close to normal as possible, filled with opportunity, independence, and happiness.