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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“If I had waited another six months, my story wouldn’t be the same.” Katherine was born into a world shaped by loss. Her older sister, Gracie, was diagnosed with Fanconi anemia (FA) shortly after the family moved to the United...
In a world where every day presents new challenges, my 11-year-old son, Omar, from Oman, stands out for his resilience and eagerness to raise awareness about Fanconi anemia. Diagnosed at just five years old, we truly believe his journey is a testament to hope and the strength of the human spirit.
Since 1991, the FA Family Retreat has been a tradition that surprises, supports, and uplifts FA families worldwide. Whether families travel from within the United States or across the globe, the retreat offers connection, educational sessions, resources, expert consultations, and...