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 and builds on the over 600 family records in MLD Foundation’s internal registry.
The MLD Patient Powered Registry is a broad and ongoing look at all aspects of your MLD journey medical, emotional, financial, and overall burden on families and caregivers … from first symptoms, through diagnostics, clinical area, therapies, your current day-to-day activities, burdens and care activities, extended family … and looking forward … how to improve your loved one’s day-to-day quality of life, emerging clinical care improvements, emerging therapies, and your hopes and desires for the future of your loved ones.
During Q1 2021 we will be offline to migrate to a new platform with greatly enhanced capabilities, including enhanced mobile access, 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-March to resume your participation in the MLD Patient Powered Registry.