MLD Patient Powered Registry

DDreambuilders Resources

visited this project

6 years ago

The MLD Patient Powered Registry is an online collection of data supplied by patients and their families describing the MLD rare disease journey. The data will be used to better understand what the patient experience is, what's important to patients, and how the disease progresses. The data will be used to guide research, improve clinical care, and guide regulatory agencies like the FDA and EMA.

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