Have you been diagnosed with calpainopathy? Please register.
Previously, no database existed of individuals affected by calpainopathy. It is very important to assemble a patient registry so that treatments can be developed. This registry helps to:
- Facilitate better estimates of the number of people living with LGMD2A, and draw attention to the cause
- Allow researchers to better understand the progression and manifestations of the disease, and locate subjects for clinical trials
- Help with fundraising and awareness efforts
Therefore, if you or a family member suffers from calpain-3 deficiency, please register yourself 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. No personally identifiable information will be shared with researchers without your prior consent.
This is an international database open to patients living in all countries. If you have any questions, or if you are a researcher who wishes to access our database, please e-mail firstname.lastname@example.org.