Cure MLD, The Calliope Joy Foundation and NORD Launch A Research and Engagement Study of Metachromatic Leukodystrophy (MLD)
The new study, Metachromatic Leukodystrophy Community United Research and Engagement Survey (MLDCures), creates a platform for patients around the world to share information about Metachromatic Leukodystrophy (MLD).
- The new study, Metachromatic Leukodystrophy Community United Research and Engagement Survey (MLDCures), creates a platform for patients around the world to share information about Metachromatic Leukodystrophy (MLD).
- "We are thrilled to announce the launch of MLDCures, a patient contact registry for families impacted by metachromatic leukodystrophy," said Maria Kefalas, cofounder of Cure MLD and The Calliope Joy Foundation.
- To help drive awareness and participation, Cure MLD and The Calliope Joy Foundation will launch an online campaign that demonstrates how the survey will be used and how individuals can register.
- Cure MLD and The Calliope Joy Foundation are members of NORD and the organizations work together to eliminate the challenges that rare disease patients face.