Fill out our survey in MLDCures today, so we can learn more about your journey and provide the best resources to support you.
What is MLDCures? MLDCures stands for: Metachromatic Leukodystrophy Community United Research and Engagement Survey. MLDCures is a Community Survey that consists of electronic surveys to collect information about the patient experience and disease progression.
Why should we share information with Cure MLD? You are smart to hesitate - however, in order to help families and update patient families on clinical trials, progress on newborn screening, and other news, we need to know about you and your family. Cure MLD also provides emergency grants, travel scholarships, care packages and mental health support programs. That's why we want to know how to contact you.
How do I participate? Patients, or their caregivers or guardians, can enter information from anywhere in the world. The data is made anonymous and stored securely in an online portal, managed professionally by Cure MLD and the National Organization for Rare Disorders (NORD).
Benefits of participation: In addition to contributing invaluable information to help us learn more about the MLD community, as a thank you gift, eligible families receive a care package and an Amazon gift card to thank them for their assistance.
Contact us at firstname.lastname@example.org to learn more.
You can opt out of the study at any time.
The Cure MLD Team
*Note: If you are having difficulty registering for MLDCures below, first be sure to click the "Accept Cookies" button near the bottom of the page or you can visit the MLDCures webpage here: https://mldcures.iamrare.org.
The information in this survey will be kept confidential and only be used to help support MLD families.
We invite you to share photos and submit a story about your loved one here so we can feature your family on the Cure MLD website and other ancillary websites.