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Global FKRP Registry

The Global FKRP Registry is an international registry that collects genetic and clinical data about persons affected by conditions caused by mutations in the FKRP (Fukutin Related Protein) gene, namely Limb Girdle Muscular Dystrophy type 2I (LGMD2I), and the rarer conditions Congenital Muscular Dystrophy (MDC1C), Muscle Eye Brain Disease (MEB) and Walker-Warburg Syndrome (WWS).

The information collected will help with the identification of patients suitable for clinical trials and allow them to participate more easily.

Patients from anywhere in the world can register.

Since patients with FKRP mutations are rare, every single person counts!

If you have Congenital Muscular Dystrophy (CMD) not related to an FKRP mutation, or if the underlying gene mutation is not yet known, please register on the CMD International Registry (CMDIR).

News (19 December 2013)

The latest newsletter (Issue 3) is now available to download. This issue focuses on care recommendations for the FKRP-related muscular dystrophies, highlighting specific areas where more attention should be focused, including the type and frequency of tests that should be performed.

Newsletter

 

CURE CMD LGMD2IFund

   

“It is a wonderful idea. Knowing that there is all this work going on gives us hope for the future.”

Carol and Susan, sisters with LGMD2I