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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Jul 22nd, 2024
It took me weeks to come to terms with the fact that there were no easy answers. I couldn't change the past or the diagnosis, so I focused on educating myself and becoming Tinslee's biggest advocate. We underwent all the necessary tests, scans, and procedures, and spent a year going in for lab work and check-ups.

Aug 4th, 2025
Israel endured so much in his short life. But even in the hardest moments, he brought so much light. One of my favorite memories from his transplant journey was how he never went by his real name. The first doctor we saw when he was admitted asked him his name, and Israel replied, “Batman.” From then on, he cycled through names from his favorite movies: Randall, Pascal, and eventually Lewis.

Jun 21st, 2024
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.