Frequently asked Questions

How do I join the Dysferlin Registry?

To join the Dysferlin Registry, patients must have a confirmed diagnosis of dysferlinopathy. The Jain Foundation can help confirm a patient’s diagnosis through genetic testing. Patients and clinicians can contact the Foundation for assistance with diagnostic resources and joining the Registry once a diagnosis is confirmed.

What types of support does the Jain Foundation offer?

The Jain Foundation sponsors and directs multiple diagnostic tools, studies and tests to help obtain a complete diagnosis which include genetic sequencing and dysferlin expression testing.

Why is the Dysferlin Registry Important?

The Dysferlin Registry is an integral step in finding a cure for dysferlinopathy by providing a central hub to communicate relevant current events and updates on research discoveries to the dysferlinopathy community. It also plays an important role as a recruitment tool for studies and trials, leading to more efficient and practical processes.

The Registry includes patient forums to allow for easy exchange of strategies for overcoming obstacles. Patients can interact with each other to discuss experiences and ask questions.

The Registry can also become a bridge between patients and the scientists working on projects in the dysferlin field. The Foundation can conduct studies remotely, through the use of the registry and include a larger number of patients as it is an international registry.

Can my clinician enter me into the Dysferlin Registry?

Yes, approved clinicians can apply to enter their LGMD2B/MMD1 patients into the Dysferlin Registry. Interested clinicians should contact the Jain Foundation to request this option.

Is there a website for care givers, volunteers, family members or friends who want to learn about ways to help fight the disease?

Yes! Patients and others who want to help fight LGMD2B/MMD1 can visit the volunteer website