The Global FKRP Patient Registry
To help advance the research and development of treatment, therapies, and care for all those diagnosed with conditions caused by changes in the FKRP gene.
The Global FKRP Registry is an international registry that collects genetic and clinical data about individuals with conditions caused by changes in the FKRP gene (Fukutin Related Protein). This includes:
Limb Girdle Muscular Dystrophy type R9 (LGMDR9), formerly known as LGMD2I or also known as Muscular Dystrophy-Dystroglycanopathy (Limb-Girdle) Type C, 5 (MDDGC5)
Congenital Muscular Dystrophy (MDC1C)
Muscle Eye Brain Disease (MEB)
Walker-Warburg Syndrome (WWS)
Patients from anywhere in the world can register.
"It is a wonderful idea. Knowing that there is all this work going on gives us hope for the future."
Coordinated by:
Supported by:
Affiliated with:
