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). Patients from anywhere in the world can register.
Registration is done online (over the internet), which allows people who sign up to the registry to view and update your data at any time. If a person is under 18, a parent or guardian must create an account on their behalf.
To register please go the FKRP website: www.fkrp-registry.org
T: +44 (0) 191 241 8605