Registry
The LGMD2L Registry, developed in partnership with Citizen Health, is a groundbreaking initiative that collects real-world data from patients living with LGMD2L. This data plays a pivotal role in helping researchers and scientists gain a comprehensive understanding of the disease, uncover patterns, and identify meaningful solutions. By contributing your personal and medical information, you will be supporting the development of new treatments, clinical trials, and potential therapies that can change the future of care for those living with LGMD2L. For the first time, patients' lived experiences are being gathered in a way that allows researchers to prioritize this rare disease and accelerate progress toward breakthroughs that could transform lives.
What is the LGMD2L Registry?

Joining the LGMD2L Registry is a simple but impactful way to contribute to advancing research and developing treatments for LGMD2L. When you sign up, you provide basic contact information and consent to share your medical data. This will allow pharmaceutical companies and medical researchers to gain valuable insights into how LGMD2L typically progresses and how patients respond to treatments. Your participation directly supports the creation of more effective clinical trials and allows researchers to understand the disease's natural history, which can lead to more personalized and efficient treatment options. This is your chance to make a lasting impact not only for yourself but for everyone affected by LGMD2L.
How can I participate?
Once you’ve registered, our digital platform takes over to simplify the process for you. It securely contacts your healthcare providers to gather your medical records on your behalf (currently available to patients in select countries). This means you don’t have to worry about reaching out to your doctors—our system handles it all. After the data is collected, you'll have access to your full medical history in one place. In addition, when researchers or pharmaceutical companies request patient data, you’ll be given the option to share that data, always anonymously. This ensures that your personal details remain private while contributing to the research that could lead to new therapies and treatments for LGMD2L.
What happens after registration?
We understand that privacy and data security are top concerns. That’s why we have put in place stringent measures to ensure that your personal information is safe. None of your data will be shared without your explicit consent, and you will always have control over when and how your information is used. If you choose to share your data for a specific study or clinical trial, you will be fully informed and compensated for your contribution in some cases. You will also be contacted if you become eligible for a clinical trial or if there are updates related to treatment options or breakthroughs. Your involvement not only accelerates research but also contributes to improving the future of care for everyone affected by LGMD2L.
Is my data secure?

By joining the LGMD2L Registry, you’re not only participating in cutting-edge research, you’re helping to pave the way for new discoveries that could lead to better guidance, treatments, and ultimately a cure. Together, we can build a stronger community, gather essential data, and drive real change in the fight against LGMD2L.
Join the Registry


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