As a 501(c)3 organization, the PMD Foundation relies on voluntary contributions from the community to serve those affected by PMD. Our organization provides education, research, service, and advocacy to families affected by Pelizaeus-Merzbacher Disease.
The PMD Family Network is open to any parent/legal guardian or sibling that is interested in accessing our advocacy services and programs.
The Leukodystrophy Center at Children’s Hospital of Philadelphia (CHOP) offers various clinical and research options that may be of interest to your family.
Behind the PMD Foundation is a group of people deeply committed to the families we serve. Our Board combines lived experience of PMD and professional expertise to guide our work and shape our future.
PMD Natural History Study
October 28, 2019
Dear Parents, Patients, and Relatives: PMD Natural History Study Call for Families – Chloe Stutterd, Victorian Clinical Genetics Services The PMD Foundation, in partnership with...
FDA Patient Listening Session
August 22, 2023
On August 22, 2023, six PMD families from across the country, and Dr. Adeline Vanderver, MD, Children’s Hospital of Philadelphia (CHOP), met with the FDA...
2023 Virtual PMD Conference
August 26, 2023
On August 26, 2023, the PMD Foundation organized a Summer Virtual PMD Conference with special guests Ionis Pharmaceuticals, Sana Biotechnology, and Children’s Hospital of Philadelphia....
Virtual PMD Symposium
July 20, 2020
We are excited to announce that we will have our first ever Virtual PMD Symposium in collaboration with the Children’s Hospital of Philadelphia (CHOP) and...
