This family driven foundation will proactively serve those affected by Pelizaeus Merzbacher Disease, supporting programs of education, research, service and advocacy. We are dedicated to providing patients and their families with information about their disease and assistance in identifying sources of medical care, social service, and genetic counselling; establishing a communications network among families; increasing public awareness and acting as an information source for health care providers; and promoting research into causes, treatment, prevention and cure of PMD.
You can learn more about PMD Foundation here.
MLD Foundation serves families affected with Metachromatic Leukodystrophy as well as collaborates with researchers and others in the areas of, but not limited to, treatments, newborn screening, natural history, policy, and legislation around MLD, and spanning the larger umbrellas of Leukodystrophies, Lysosomal Diseases and Rare Diseases. The Foundation’s mission of We C.A.R.E.™ stretches from Compassion and support for MLD families, to Awareness, to influencing and funding Research, and promoting Education. MLD Foundation believes focusing on the future is important but it’s just as important to focus on those living with the disease today and providing the best quality of life possible.
You can learn more about MLD Foundation here.
European Leukodystrophy Association (ELA)
The goal of ELA is to help research laboratories to understand disease mechanisms, to identify genes that are responsible and to develop new therapeutic strategies to fight against diseases and leukodystrophies myelin. Since 2005, ELA is based on its Research Foundation to promote research on leukodystrophies and myelin repair. Each year, through the publication of a tender, the ELA Foundation invites the international scientific community to submit research projects in the field of genetic leukodystrophies, the cerebral white matter in premature infants and of myelin repair.
You can learn more about ELA here.
Mission Massimo Foundation
The Mission Massimo Foundation promotes the prevention, diagnosis and treatment of childhood Leukodystrophies. Its aim is to accelerate the discovery of genetic variations responsible for childhood Leukodystrophies and to support research into clinical treatments.
You can learn more about Mission Massimo here.
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. It strives to support and encourage those afflicted and their families as they struggle to endure, adjust and cope with the demands of these fatal illnesses.
You can learn more about Hunter's Hope here.
Courageous Parents Network
Courageous Parents Network supports parents of children living with serious illness with the tools and virtual support they need to cope and adapt during their child’s illness journey. Their vision is that parents feel supported and empowered as they care for their children, and that the family’s journey is one of minimal regret and maximum healing.
You can learn more about the Courageous Parents Network here.
Australasian Leukodystrophy Foundation
To maximize health care resources, advance the world’s leading research and to provide the premium Support for all the Australasian Leukodystrophy families with the outcome being a Cure; to provide charitable services for the relief of sickness, suffering, distress, misfortune, disability or helplessness of people, and to work proactively to enhance the physical, emotional and spiritual well-being of people in the Leukodystrophy communities of Australasia and to actively promote and fund Global research into Leukodystrophy in order for it to benefit the Australasian families with the ultimate aim to find a cure.
You can learn more about the Australasian Leukodystrophy Foundation here.
The M.O.R.G.A.N. Project
The M.O.R.G.A.N. Project is a national, community-based organization of volunteers dedicated to promoting awareness and facilitating support of parents caring for their children with special health care needs, thereby enhancing the Quality-of-Life for these special families. Our mission is to provide the tools for a therapeutic and fun experience to children with physical and developmental needs. We do this through our 5 unique Quality-of-Life support programs and volunteer outreach.
To find out more about the M.O.R.G.A.N. Project, please click here.
ALD Connect is an international, independent, non-profit group of ALD patients, patient advocates, and researchers, who collaboratively educate, advocate, and conduct clinical research among the men, women, and children affected by x-linked adrenoleukodystrophy (ALD). The mission of ALD Connect is to improve the lives of individuals with ALD by facilitation communication, raising awareness, improving education, and advancing scientific understanding of the disease.
You can learn more about ALD Connect here.
The Foundation to Fight H-ABC
The Foundation to Fight H-ABC is a 501(c)(3) non-profit organization created by the parents of a child affected by H-ABC to increase public awareness and fund a cure.
H-ABC, which stands for hypomyelination with atrophy of basal ganglia and cerebellum, is very rare. As of 2016, only 86 individuals with this condition have been identified. However, this number is growing quickly, largely due to its recent discovery. Unfortunately, at this time, there is no known cure. The good news is that research is currently underway, and facilities like Children's National, amongst others, are exploring gene therapy. All of the funds raised by the foundation will be donated to those actively involved in researching and finding a cure for H-ABC.
The founders believed that just because a disease is rare does not mean it should receive less attention or scrutiny. Research on similar conditions has been ground-breaking, and the research currently underway for H-ABC can potentially be applied to other neurological conditions.
You can learn more about The Foundation to Fight H-ABC by visiting their website here.