The MLD Patient Powered Registry empowers MLD caregivers, patients, and extended family members to participate with other MLD families to give a better understanding of the MLD journey … from diagnosis & diagnostic odyssey to progression to clinical care to therapies, including questions about the impact on your close and extended family.
Your answers will help better characterize the disease, better understand the burden of MLD on families, and identify areas that need to be addressed to improve the lives of those living with MLD.
Participation from all MLD families is needed … those with living MLD loved ones and those who have lost their loved ones – all of you have valuable MLD experience!
Your data is securely stored, remains owned by you, and you have dynamic control over your privacy (sharing) preferences.
Get started now – you can stop and any point and return at your convenience to continue to contribute.