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

Jakub Tolar
Dept. of Pediatric Hematology-Oncology | MD, PhD | Minneapolis, MN
Dr. Tolar’s research focuses on finding new ways of treating children with lethal diseases – cancer, inborn errors of metabolism, and devastating genetic disorders – using stem cell transplantation. He is also looking for safer and more effective methods of repairing and using a patient’s own cells in diseases such as epidermolysis bullosa, mucopolysaccharidosis type I (Hurler syndrome), Fanconi anemia, and dyskeratosis congenita.
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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.