The International LGMD2D Patient Registry is free to join and is currently the only database for patients afflicted with LGMD2D.
The purpose of this patient registry is to help assist in the development of treatments for LGMD2D. This registry will:
- Help researchers identify patients who quality for future clinical studies and trials
- Allow researchers to study disease progression
- Raise awareness of LGMD2D
- Assist patients in finding appropriate clinical and research experts to help them manage their disease
We highly encourage anyone with LGMD2D to join the patient registry today and ask that you share this link with anyone you know who has been diagnosed with LGMD2D/alpha-sarcoglycanopathy. Once registered, you will receive email updates with clinical trial opportunities. Please note that your privacy is very important to us and no personally identifiable information will be shared with researchers without your prior consent.
If you have any questions about the registry, please email us at firstname.lastname@example.org