FA-Lexicon: Research

FA patient registries – are a MUST to do!

The goal of patient registries is to learn more from, for, and about people with Fanconi anemia. Therefore, they collect the medical information of the registered people with FA. Especially with rare diseases, the pooling of „individual cases“ plays a major role. Only when information on patient histories and therapies is pooled together can comparison and learning take place. From this, treatment recommendations and therapies can be developed.
Therefore, you must register with your FA patient registry in your country.

In the United States, you can register HERE.
In Germany, you can register HERE.