Where the MLD community comes together to learn, advance research, and improve clinical care & quality of life for our loved ones by sharing our MLD journeys.
The MLD Patient Powered Registry dates back to 2014. During late August and early September, 2020 we will be offline to migrate to a new platform with greatly enhanced capabilities, including being mobile friendly, improved survey modules, and the ability to upload EHRs (Electronic Health Records), clinical/lab results, and genomic information.
MLD Foundation will continue to use this information – always deidentified – to enhance research, advance regulatory reviews and approvals, and most importantly, to improve the quality of life for your MLD loved one(s), your family, and MLD families around the world.
Please check back mid-September to resume your participation in the MLD Patient Powered Registry.