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Coming Together to Find a Cure

Resources

Please note: The links in this section lead to third-party pages that are not part of the ALD Connect Network website.

Organizations

Global Leukodystrophy Initiaive (GLIA)

Phone: (202) 476-4975 | E-mail: myelindisorders@cnmc.org

The Global Leukodystrophy InitiAtive (GLIA) aims to accelerate the discovery of novel variations responsible for pediatric white matter disorders and to translate these findings into clinical treatments.

Hunter’s Hope

Phone: (716) 667-1200 | E-mail: info@huntershope.org

Hunter’s Hope Foundation is a non-profit organization committed to giving hope through education and awareness, research and family care for Krabbe, Leukodystrophies and Newborn Screening.

The Myelin Project

Phone: (800) 869-3564

The Myelin Project was established by a family affected by adrenoleukodystrophy (ALD). The main objective of The Myelin Project is to end human suffering caused by myelin disease. Their mission is to fund scientific and clinical research to find a cure for myelin disease, provide financial assistance to low-income families affected by the disease, raise awareness and promote education of adrenoleukodystrophy and advocate for newborn screening of ALD and AMN. .

The Stop ALD Foundation

Phone: (713) 756-3232 | E-mail: rachel@stopald.org

The Stop ALD Foundation focuses on accelerating the process of developing new knowledge and new therapies for adrenoleukodystrophy (ALD), and works to accelerate implementation of newborn screening for ALD. We also educate the medical profession and the public about ALD, raising awareness in order to improve detection, diagnosis and treatment. In addition, we serve as a resource to families affected by the condition.

The United Leukodystrophy Foundation (ULF)

Phone: (800) 728-5483 | E-mail: office@ulf.org

The United Leukodystrophy Foundation serves individuals and families affected by leukodystrophies by exchanging information and promoting progress on research, treatment and prevention.

Treatment Centers

University of Utah, Salt Lake City, UT

Stanford University, Palo Alto, CA

University of Minnesota, Minneapolis, MN

Massachusetts General Hospital, Boston, MA

Kennedy Krieger Institute, Johns Hopkins, Baltimore, MD