FAQ FOR PATIENTS AND FAMILIES
Coalition to Cure Calpain-3 has published a list of answers to Frequently Asked Questions about LGMD2A. You may download the FAQ here.
WHY JOIN THE LGMD2A PATIENT REGISTRY
LGMD2A/Calpainopathy is a rare disease that is poorly understood, partly because there is no internationally recognized patient registry.
If the scientific world doesn’t know we are out here…
- We cannot attract the attention of researchers.
- We have no way of highlighting the importance of finding a treatment or cure.
- Researchers do not have a list of people to contact about clinical trials of promising therapies.
- Researchers cannot achieve greater understanding of the disease without our input, given the varying rates of progression and ways LGMD2A manifests itself.
Therefore, if you or a family member suffers from LGMD2A/Calpainopathy, please register here. If you know of anyone else with the disease, please refer them to this web site and ask them to register as well. Once registered, you will receive e-mail updates on research progress and clinical trial opportunities. Personally identifiable information will not be shared with researchers without your prior consent.