Patients who are already genetically diagnosed with mutations in the dysferlin gene (i.e. LGMD2B/Miyoshi/Dysferlinopathy)
The international patient registry is curated for individuals who have been genetically diagnosed with dysferlinopathy (LGMD2B and Miyoshi Myopathy) through the identification of mutation(s) in the dysfelrin gene. If you have already been genetically diagnosed with mutation(s) in the dysferlin gene, please email us at email@example.com and we will give an overview of the community and discuss your placement in the registry.
When you are registered with the Jain Foundation, you will have access to the following services:
- General information about LGMD2B/Miyoshi (a.k.a. Dysferlinopathy)
- Help finding appropriate experts (both scientific and clinical) in your country or area
- Information about ongoing or upcoming clinical trials relevant to your disease
- A source of knowledge about treatment options that are under development
- Options to communicate with others in the community
- Analytics and mutational data through your profile
- Remote participation through data studies
Because dysferlinopathy is a very rare disorder (estimated at 5-8 patients/million population), we are reaching patients globally to gather the numbers of patients necessary for future clinical trials. The world map below shows the distribution of the Jain Foundation registrants by country as it stands currently.