International Fanconi Anemia Registry. A registry that serves as the central repository for clinical, hematologic, and genetic information on patients with Fanconi Anemia, and cellular material from patients and their families. This growing clinical database supports the study of the full spectrum of the diverse features of the disease. Established at The Rockefeller University in 1982.
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What started as a small local fundraiser in memory of an incredible little girl has evolved into a powerful movement uniting friends, family, neighbors, and supporters in pursuit of a future with better outcomes and brighter hope for families affected by FA.
When Annzie was six, what started as a routine well visit turned our world upside down. She had always been small for her age, but that visit revealed more: recurring infections and low platelet counts that led to urgent bloodwork. We were referred to hematology, and that began our FA journey.
We’re thrilled to share that Rena and Paul Rice, parents of two children with Fanconi anemia—Sydney (19) and Blake (25)—have made an extraordinary commitment to the FA community: a gift of $100,000 per year for the next three years to...