Global Leukodystrophy Initiative Consortium (GLIA)
Children’s Hospital of Philadelphia (CHOP) is leading an initiative to establish a multi-institutional program to advance research and treatment across the leukodystrophies.
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KrabbeConnect
The idea for KrabbeConnect originated from the 2015 Family Centered-Krabbe Translational Research Network meeting (FC-KTRN), a collaborative meeting between researchers and families to aid in solving the uncertainties of Krabbe disease. Through KrabbeConnect, the foundation provides a platform to amplify the voice of patients, aiding researchers and drug developers in accelerating research for better treatments for Krabbe disease.
Hunter's Hope Foundation
Hunter’s Hope Foundation was established to address the acute need for information and research with respect to Krabbe Disease and related Leukodystrophies. In addition, our mission is to strive to support and encourage those afflicted and their families as they struggle to endure, adjust and cope with the demands of these fatal illnesses.
Rosenau Family Research Foundation
Improving the lives of patients impacted by Krabbe disease and Cystic Fibrosis through research funding and disease advocacy.
MLD Foundation
MLD Foundation was formed in May 2001 to serve families throughout the world affected by metachromatic leukodystrophy (MLD), an ultra-rare, terminal, neurometabolic, genetic disease.
PMD Foundation
This family driven foundation will proactively serve those affected by Pelizaeus-Merzbacher Disease (the PMD community) by supporting programs of education, research, service and advocacy.
Canavan Foundation
The Canavan Foundation is a 501c3 not-for-profit organization dedicated to educating at-risk populations about Canavan disease and other genetic diseases and the reproductive options available to carrier couples. We encourage preconception genetic carrier screening whenever appropriate. In addition, the foundation supports research towards treatments and a cure for Canavan disease.
ALD Connect
At ALD Connect, our mission is to improve the health outcomes of individuals affected by adrenoleukodystrophy (ALD). By empowering patients, raising awareness, and accelerating the translation of scientific breakthroughs into better clinical care, we aim to make a lasting impact on the ALD community. Together, we are committed to revolutionizing care and driving progress toward a cure.
Mission Massimo Foundation
The Mission Massimo Foundation aims to exponentially accelerate the discovery of novel genetic variations responsible for childhood Leukodystrophies and to translate these findings into clinical treatments.
Elise’s Corner
Creating a support network for individuals, families, and friends affected by AxD.