Pelizaeus-Merzbacher Disease

Hunter's Hope Foundation[A Leukodystrophy Resource]

Fosters awareness about Krabbe disease and other leukodystrophies, works to promote early detection through newborn screening, provides information and service linkages to families, and funds research efforts to identify new treatments and therapies, and ultimately, a cure.

Website

https://www.huntershope.org/

Phone

716-667-1200; 877-984-HOPE (4673)

Address

P.O. Box 643
21 Princeton Plaza, Suite 12
Orchard Park,
NY 14127

National Organization for Rare Disorders (NORD)

Federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. Committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.

Website

https://rarediseases.org

Phone

203-744-0100; 800-999-6673; 844-259-7178 Spanish

Address

55 Kenosia Avenue
Danbury,
CT 06810-1968

PMD Foundation (Pelizaeus-Merzbacher Disease)

Tax-exempt, nonprofit organization that serves families, researchers, and others affected by Pelizaeus-Merzbacher disease by supporting education, research, services, and advocacy programs.

Website

https://www.pmdfoundation.org

Phone

214-313-9107

Address

P.O. Box 898
Salado,
TX 76751

United Leukodystrophy Foundation

Nonprofit voluntary health organization dedicated to providing patients and their families with information; assistance in identifying sources of medical care, social services, and genetic counseling; establishing a communication network among families; increasing public awareness, and acting as an information source for health care providers. Promotes supports research into causes, treatments, and prevention of the leukodystrophies.

Website

https://ulf.org

Phone

815-748-3211; 800-728-5483

Address

224 North 2nd Street, Suite 2
DeKalb,
IL 60115