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.

Aicardi-Goutières Syndrome Advocacy Association

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, 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.

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 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

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

This organization’s primary aim is to provide support to families affected by metachromatic leukodystrophy through their website and Facebook group, as well as at annual Family Conferences and Fun Days. This enables families to share their experiences of living with MLD.

MSD Action Foundation

The MSD Action Foundation works to promote and support clinical research advancements that will lead to a life-saving treatment or cure for children with 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.

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.

ADVOCACYPARTNERS

ADVOCACY
PARTNERS