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.
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Peter Kurre
Director of the Pediatric Comprehensive Bone Marrow Failure Center | MD | Philadelphia, USA
With extended training in pediatric hematology, oncology and stem cell transplantation, Dr. Kurre’s clinical work is focused on children with hematopoiesis failure (i.e., bone marrow failure) across a wide spectrum of inherited and acquired conditions that lead to loss of blood formation. As a physician-scientist, his clinical and scientific goals are directed at improving our understanding and broadening our treatment options for patients with bone marrow failure.
Dr. Kurre’s clinical interests focus on diagnosis and treatment of bone marrow failure, specifically on improving diagnostic and therapeutic capabilities. Along with colleagues at other institutions, he is spearheading efforts to leverage molecular technologies toward the development of tests that improve diagnostic certainty and timeliness of genetic hematopoiesis failure conditions. Dr. Kurre’s laboratory has longstanding expertise in Fanconi anemia (FA), a rare inherited genetic condition with prominent hematologic complications. The long-term goal is to improve our understanding of the progressive hematopoietic failure that occurs in patients with FA. His other lab projects are focused on stem cell regulation by trafficking of extracellular vesicles in the bone marrow microenvironment.
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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.