Tremor-ataxia-central hypomyelination syndrome

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Data from Orphanet are used to provide information on a disease's name, synonym(s), and overview. Reference: Access aggregated data from Orphanet at Orphadata. Orphadata: Free access data from Orphanet. © INSERM 1999. Available on http://www.orphadata.org. Data version June 2024

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Tremor-ataxia-central hypomyelination syndrome?

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Advocacy Organizations

Aicardi-Goutieres Syndrome Advocacy Association

AGSAA is a global coalition of deeply dedicated parent advocates working alongside clinicians, researchers, and scientists. We are united in our desire to improve the lives of individuals and families living with Aicardi-Goutières Syndrome and those yet to be diagnosed. Everything we do reflects a sense of urgency to rescue patient potential and preserve quality of life through accelerating research and providing timely emotional and educational support alongside evolving clinical care recommendations to affected families.

Mitchell’s Fund

Founded in 2016 in memory of Mitchell Bays Turner, who lost his life to a rare form of leukemia, Mitchell’s Fund provides targeted mental health services to some of Charlotte's most vulnerable families: those experiencing the trauma of a childhood diagnosis of a terminal or life-threatening illness. Our primary goal is to provide counseling and play therapy to sick children and families at no cost

National Ataxia Foundation

Ataxia is a rare neurological disease affecting tens of thousands of people in the US and many thousands more around the world. It is progressive, affecting a person’s ability to walk, talk, and use fine motor skills. The National Ataxia Foundation (NAF) was established in 1957 to help persons with Ataxia and their families. Our mission is to accelerate the development of treatments and a cure

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Clinical Trials

For a list of clinical trials in this disease area, please click here.