ADVOCACY
PARTNERS
The GLIA-CTN is fortunate to work with an incredible group of advocacy partners around the world. Some focus on raising funds for ongoing research into the causes - and potential cures - of leukodystrophies, while others provide financial support to enable disadvantaged families to travel to a specialized care center. All of these organizations are united in their goal to help patients and families identify the most appropriate diagnostic and/or therapeutics options, and to provide them with the resources needed to optimize their care.
Note: If you would like to have information about your organization listed, we would welcome the opportunity to add it to this page. We invite you to use the Contact Us form to share a brief summary of your organization along with a link.
ADLD Center
The ADLD Center’s mission is to support research into various aspects of Autosomal Dominant Leukodystrophy. They aim to enable research on pathology and therapy, while helping create a support network to disseminate relevant information. Their work includes raising ADLD awareness among physicians, scientists, and the public, supporting relevant research through grants, providing a caring and educational community for patients and their families, a serving as a unique information resource.
The Aicardi Goutieres Syndrome Advocacy Association (AGSAA) is a global coalition of deeply dedicated parent advocates working alongside clinicians, researchers, and scientists. United in their desire to improve the lives of individuals and families living with and yet to be diagnosed with Aicardi-Goutières Syndrome (AGS), the AGSAA is focused on accelerating research, providing timely emotional and educational outreach, and developing ever-evolving clinical care recommendations to affected families.
ALD Alliance
ALD Alliance, formerly known as the Aidan Jack Seeger Foundation, helps families across the United States that are newly diagnosed with adrenoleukodystrophy (ALD) by giving them the resources they need to fight this rare and devastating disease.
ALD Connect
With its mission to improve health outcomes for patients with X-linked adrenoleukodystrophy, ALD Connect provides education and support information for families, research information, ways to get involved, and more.
Alex, The Leukodystrophy Charity (Alex TLC) is a trusted and experienced organisation offering support and information for all those affected by a genetic leukodystrophy. Formerly ALD Life, an internationally recognized center of excellence for individuals affected by adrenoleukodystrophy and adrenomyeloneuropathy, the charity was established in 2004. Due to popular demand, they have since extended their services to support all leukodystrophies as Alex TLC.
Arrivederci ALD
Arrivederci ALD's focus is identifying and funding scientific and medical research that will lead to more effective treatments and a cure for ALD and AMN. They also engage in advocacy and awareness efforts to support individuals and families across the country suffering from ALD.
Bethany’s Hope Foundation
Bethany's Hope Foundation was founded over two decades ago and has been instrumental in raising funds to support groundbreaking research on metachromatic leukodystrophy (MLD) in Canada.
Cure GM1 Foundation
The Foundation's mission is to fund research for the benefit of all those who suffer from GM1 gangliosidosis. Their website provides information about GM1, clinical trials, videos, patient stories, ways to get involved and more.
The CTX Alliance’s mission is to support, educate, and provide a voice for CTX patients and their caregivers as researchers work toward a cure. Their purpose is to provide education, support, advocacy, and promote innovative research for patients affected with Cerebrotendinous Xanthomatosis (CTX), as well their families and medical professionals who treat and study this rare disease.
Cure MLD
Offers support to families recently diagnosed with or living with metachromatic leukodystrophy (MLD). The website links to relevant clinical and research opportunities available around the world.
Cure LBSL, formerly known as “A Cure For Ellie”, is an international foundation supporting patients and families affected by LBSL (Leukoencephalopathy with Brain Stem and Spinal Cord Involvement and Lactate Elevation). Their mission is to bring awareness, support, and hope to patients and families, and to fund and accelerate research into potential treatments and cures.
Elise’s Corner
Elise’s Corner is a community group focused on spreading awareness of Alexander disease and aiding research efforts to find treatments and a cure for this rare genetic disorder.
End Axd
End AxD's Mission is to be a catalyst for research and development of a treatment, and eventual cure, of Alexander Disease, and to help those with this disease get the care they need. End ExD raises funds to support groundbreaking research in Alexander Disease, hosts a patient registry to create a larger pool of participants for future clinical trials and help understand the features of Alexander Disease, and promotes awareness and education campaigns through its website, as well as in-person conferences and events.
European Leukodystrophy Association
Provides assistance and support to families affected by leukodystrophy, funds research projects, raises public awareness, and collaborates with international organizations to pool resources to develop research.
Fight ALD
Recognizing that many medical providers had little experience or education about adrenoleukodystrophy, Fight ALD was founded to provide newly diagnosed families with essential information about the disorder along with other key resources.
Fundación Lautaro te Necesita
La Fundación Lautaro te Necesita es una asociación civil sin fines de lucro que está funcionando desde 2014 en Argentina. Su misión es contribuir a mejorar la calidad de vida de todas aquellas personas afectadas por leucodistrofias.
Global DARE Foundation
The Global DARE foundation is a global community of individuals, caregivers, healthcare professionals, and supporters, dedicated to improving the lives of those affected by Refsum Disease.
H-ABC Foundation UK
H-ABC Foundation UK’s purpose is to promote and protect the physical and mental health of individuals living with H-ABC through the provision of support, education and practical advice to their families, to promote and fund medical research into the condition, and to advance the education of the public in all areas in relation to H-ABC.
Hunter's Hope Foundation
Hunter's Hope Foundation is a non-profit organization committed to giving hope through education and awareness, research, and family care for leukodystrophies.
KrabbeConnect
It's committed to pioneering a patient-centered care model and strengthening groundbreaking research by engaging the patients and caregivers with the Krabbe research community, to ensure the needs of Krabbe patients are being voiced.
The LCC Foundation
The LCC Foundation’s is to help families across the United States and beyond diagnosed with Leukoencephalopathy with Brain Calcifications and Cysts (LCC) by giving them the resources they need to fight this rare and devastating disease. We advocate funding research efforts that will identify new treatments, therapies, and ultimately a cure for LCC. We seek to raise awareness of LCC thus increasing the probability of earlier diagnosis and treatment.
Leukodystrophy Australia
We assist in empowering people throughout their leukodystrophy journey and beyond. We offer support, foster member connections, provide service linkages, education, advocacy and promote current trends in treatments and research. Their Family Advocate program services members Australia-wide.
Leukodystrophy Family Forum
Find answers to frequently asked questions and common issues shared by the leukodystrophy community. Access disease and research information and links to support resources.
Leukodystrophy Newborn Screening Action Network
The Leukodystrophy Newborn Screening Action Network is a coalition of leukodystrophy patient advocates dedicated to championing the cause of newborn screening for leukodystrophies and lysosomal storage disorders.
Leukodystrophy Resource & Research Organisation
This group seeks to maximise health care resources, advance the world’s leading research and to provide premium support for all Australasian leukodystrophy families with the outcome being a cure.
Mission Massimo Foundation
It aims to exponentially accelerate the discovery of novel genetic variations responsible for childhood leukodystrophies and to translate these findings into clinical treatments.
MLD Foundation
A non-profit organization serving families throughout the world affected by metachromatic leukodystrophy. Find information about MLD, including educational, research, clinical trials, advocacy and more.
MLD Support Association UK
MLD Support Association UK was set up to bring hope to families in the fight to eradicate Metachromatic Leukodystrophy (MLD). Its aim is to provide support by way of shared information from people in similar circumstances who have already experienced the effects of the condition and/or any new research and treatments available.
MSD Action Foundation
MSD Action Foundation a tax-exempt charity registered in Ireland. It was founded in 2015 by Alan and Michelle Finglas, parents of a young boy, Dylan, affected by Multiple Sulfatase Deficiency (MSD). Its mission is to promote and support research advancements that will lead to improvements in clinical outcomes, life expectancy and quality of life for patients suffering from MSD.
National Tay-Sachs and Allied Diseases Association
National Tay-Sachs & Allied Diseases Association (NTSAD) leads worldwide efforts to find treatments, therapies, and eventually a cure for Tay-Sachs, Canavan, GM1, and Sandhoff diseases. We drive research, build connections, facilitate collaboration, and nurture community. We provide more than 750 individuals and families from around the world with connection, resources, and individual support.
PMD Foundation
The PMD Foundation serves those affected by PMD through education, research, service and advocacy. The Foundation is dedicated to providing patients and their families with information about their disease and assistance in identifying sources of medical care, social service, and genetic counseling; 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.
Remember The Girls
Their mission is to raise awareness of the many issues facing female carriers of x-linked recessive genetic disorders; to provide a forum for x-linked females to share their stories, ask questions, provide and receive emotional support, and develop friendships; and to advocate for increased attention of the medical community to the physical and emotional issues of females who carry x-linked disorders.
Sisters’ Hope Foundation
The mission of Sisters’ Hope Foundation is to support and empower families impacted by hereditary diffuse leukoencephalopathy with spheroids (HDLS) and adult-onset leukoencephalopathy with axonal spheroids and pigmented glia (ALSP) by educating the public to increase awareness around this rare disease, advocating for further research and funding to improve treatment options, connecting patients and families with this diagnosis to build community and support, and providing financial assistance and resources to those in need.
The Calliope Joy Foundation
The Calliope Joy Foundation is a charitable non-profit organization with 501(c)(3) status. The Foundation raises funds to support research, improve care, and help families touched by leukodystrophy. It also spearheaded Cure MLD, is global network of patient advocates and nonprofits dedicated to helping families impacted by MLD.
The Canavan Foundation
The Canavan Foundation is a 501(c)(3) nonprofit organization dedicated to educating at-risk populations about Canavan Disease and other genetic diseases, and the reproductive options available to carrier couples. In addition, the Foundation supports research towards treatments and a cure for Canavan Disease.
The Foundation to Fight H-ABC
The Foundation to Fight H-ABC provides information about TUBB4A-related leukodystrophy to spread awareness about this degenerative disease, and raises funds for research on gene therapy treatments that could stop the degenerative effects of H-ABC.
The Rosenau Family Research Foundation
The Rosenau Family Research Foundation is a 501 (c)(3), private family foundation established in 2008 by Paul and Susan Rosenau. It seeks to improve the lives of patients impacted by Krabbe disease and Cystic Fibrosis through research funding and disease advocacy.
The Stop ALD Foundation
The Stop ALD Foundation focuses on accelerating the process of developing new knowledge and new therapies for adrenoleukodystrophy, and works to accelerate implementation of newborn screening for ALD.
The Yaya Foundation for 4H Leukodystrophy
The Yaya Foundation focuses on finding a cure for 4H leukodystrophy by supporting research, raising awareness, improving education and connecting families.
United Leukodystrophy Foundation (ULF)
ULF is a non-profit, voluntary health organization dedicated to funding cutting-edge research and to providing patients and their families with disease information and medical referrals.
United MSD Foundation
Provides information about multiple sulfatase deficiency (MSD), patient resources, events, family stories, research information and more.
