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

MLD Foundation

Website

https://www.mldfoundation.org

Phone

800-617-8387; 503-656-4808

Address

21345 Miles Drive
West Linn,
OR 97068

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

National Tay-Sachs and Allied Diseases Association

The mission of the National Tay-Sachs & Allied Diseases Association is to lead the fight to treat and cure Tay-Sachs, Canavan and related genetic diseases and to support affected families and individuals in leading fuller lives.

Website

https://www.ntsad.org

Phone

617-227-4463

Address

2001 Beacon Street
Suite 204
Boston,
MA 02135

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