Patient Advocacy Groups
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 therapeutic 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.
Aicardi-Goutières Syndrome Advocacy Association
Aims to eradicate Aicardi-Goutiéres syndrome and improve the lives of impacted families through medical advancement, direct support, and advocacy.
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
Brings together patients, families, advocates, physicians, scientists, and other stakeholders centered around adrenoleukodystrophy (ALD).
Alex, The Leukodystrophy Charity
Offers support and information for all those affected by a genetic leukodystrophy.
A Rare Ruby
By connecting families and supporting leukodystrophy research, A Rare Ruby has established itself as one of the key resources for individuals and families affected by H-ABC and TUBB4A-related leukodystrophy.
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.
Chloe’s Fight Rare Disease Foundation
Chloe’s Fight Rare Disease Foundation is dedicated to supporting the development of cures and treatments for childhood lysosomal storage diseases (LSDs) by funding research, advocating policy for patients, and raising awareness.
CTX Alliance
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 GM1 Foundation
Funds research to benefit all individuals affected by GM1 gangliosidosis.
Cure LBSL
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 Alexander Disease
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.
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.
Fundación Lautaro te Necesita
Su misión es mejorar la calidad de vida de las personas afectadas por leucodistrofias impulsando la investigación y la educación para lograr diagnósticos tempranos que posibiliten el acceso a tratamientos adecuados.
Gavin Flying for a Cure
Gavin Flying For A Cure was created to honor Gavin Quimby (Super Gav) and to bring awareness to metachromatic leukodystrophy (MLD). Read Gavin's story and find out how you can get involved.
GliaConnect
GliaConnect seeks to foster a safe and compassionate community of support for patients, caregivers, and families living with brain diseases caused by microglial dysfunction. They strive to create global collaboration, bringing together clinicians, researchers, and families to further advance understanding of microgliopathies. They are committed to funding translational research that will one day lead to a cure.
Global DARE Foundation
Promotes worldwide awareness and better quality of life for all who are diagnosed with adult 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
Supports and encourages those affected by Krabbe disease and related leukodystrophies.
Kinslow TUBB4A Foundation
The Kinslow TUBB4A Foundation seeks to advocate, raise awareness, and drive research efforts forward, because every person affected by TUBB4A deserves hope, support, and the promise of a better tomorrow.
KrabbeConnect
Provides a platform to amplify the voice of patients, aiding researchers and drug developers in accelerating research for better treatments for Krabbe disease.
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
Aims to support individuals and families affected by leukodystrophy, raise awareness, and encourage leukodystrophy-related research.
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.
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
Aims to bring hope to families in the fight to eradicate metachromatic leukodystrophy (MLD) by providing support and information on research and treatments.
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
NTSAD is one of the oldest patient advocacy groups in the country, focused on funding research, providing support services to families and individuals worldwide, and raising awareness to prevent disease.
PMD Foundation
Find information about Pelizaeus-Merzbacher disease (PMD), ways to communicate with other families, research information into causes, treatment, prevention and cure of PMD, and much more.
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.
Rosenau Family Research Foundation
Works to promote the expansion of newborn screening and to further education, awareness, and research of Krabbe disease and cystic fibrosis.
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
Their fundraising efforts helped establish the nation's first Leukodystrophy Center of Excellence at CHOP. Learn about their cupcake challenge and how to get involved, and find information about current and upcoming clinical trials.
The Canavan Foundation
The Canavan Foundation is a not-for-profit organization dedicated to educating at-risk populations about Canavan disease and other Jewish genetic diseases and supporting research looking into a cure.
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/young adults with special healthcare needs.
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
Fights for people affected by 4H (POLR3-related) leukodystrophy.
Tori’s Triumph
Their mission is to further awareness about Krabbe Disease and other leukodystrophies by telling Tori’s story and by advocating for newborn screening (NBS) legislation.
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.
VWM Families Foundation
The VWM Families Foundation was formed to raise awareness of vanishing white matter disease (VWM), to raise money for research, and to support families living with VWM worldwide.