Huntington’s disease support groups and resources

Last updated April 25, 2025, by Mary Chapman

 

If you or a loved one has Huntington’s disease (HD), it can be helpful to connect with a community made up of people who understand what you’re going through.

In-person and online Huntington’s disease support groups can provide you and your caregiver with practical and emotional support, insights into managing symptoms, and a range of Huntington’s disease resources, including financial advice.

Support groups

Participating in a support group allows you to join others who can relate to your experiences and discuss topics such as Huntington’s disease and mental health, your physical symptoms, and how the disease affects your relationships.

To find a support group, you can ask your healthcare team for recommendations or contact a Huntington’s disease treatment center.

In the U.S. and Canada, you can find local support groups through national organizations such as:

• Huntington’s Disease Society of America (HDSA)
• Huntington’s Disease Youth Organization
• Huntington Society of Canada.

International organizations may be able to help guide you to support groups globally. They include:

• International Huntington Association
• Huntington’s Disease Association (UK)
• European Huntington’s Disease Network
• European Huntington Association.

Online support

Online Huntington’s disease support groups and forums are great for sharing experiences and getting encouragement and practical advice from the comfort of your home. This can be helpful if you experience mobility issues such as chorea, the abrupt, involuntary muscle movements that are an early symptom of Huntington’s disease.

Interactive support groups where you can talk to people with HD worldwide include:

• Huntington’s Disease Support Group on Facebook 
• Huntington’s Disease on Facebook
• r/Huntingtons on Reddit
• Huntington’s Disease Association message board.

The HDSA also offers online support groups and online resources for parents, caregivers, people at risk of developing Huntington’s, and those in the disease’s early stages.

In addition to these interactive communities, social media can provide insights into symptom management, genetic testing and research, and more. For example, the Huntington’s Disease News Facebook page posts news stories and perspectives from those in the Huntington’s community.

While online information can be helpful, you should still ask your healthcare provider for advice. Online content cannot replace professional medical information.

Financial resources

A study on Huntington’s costs found that the price for Huntington’s care, including medication, increases as disease severity progresses from the early to late stages.

The average annual cost of HD medications for people in the early stages of the disease is $2,483. Those in the late stages can expect their yearly average expense to be about $6,300.

Research on costs from 2023 showed that for people with Huntington’s who had commercial insurance, the average annual care cost during the disease’s early stages was $4,947. The cost rose to $22,582 for those in the late stages.

For those with Medicare, the mean annual cost in early Huntington’s was $13,264. In late Huntington’s, that amount rose to $40,761. On average, Medicare beneficiaries with HD paid $19,182 annually for prescription medications.

The following resources may provide financial assistance for Huntington’s disease out-of-pocket costs. Government assistance may also be available through federal or state-sponsored healthcare assistance programs.

• The Assistance Fund
• Co-Pay Relief
• State pharmaceutical assistance programs
• HealthWell Foundation
• Patient Advocate Foundation
• EveryLife Foundation for Rare Diseases
• PAN Foundation
• HelpCureHD

Educational support

Conferences and symposiums ​​open to the public,​​ such as the Huntington’s Disease Society of America’s annual convention, can provide extensive education and information opportunities. These events can also serve as networking opportunities for people living with Huntington’s disease and their caregivers.

Huntington’s Disease Awareness Month, observed each May, also offers educational opportunities. As part of its program last May, the HDSA presented educational programs to foster a better understanding of Huntington’s while supporting those affected by the disease. International Huntington’s Disease Awareness Day, May 15, also provides opportunities for education.

Webinars and podcasts, like the HDSA monthly podcast, which offers insights into the disease and information on how to get involved in the organization, can also be good sources of information.

Medical information

Huntington’s disease education begins with your healthcare team. That may mean learning about Huntington’s diagnosis, cause, symptoms, and treatment.

Establishing a comprehensive healthcare team for Huntington’s involves assembling medical professionals specializing in movement disorders management. Those include:

• a neurologist who has expertise in Huntington’s for diagnosis and treatment
• a psychologist or psychiatrist to address psychiatric symptoms
• a genetic counselor to provide information about HD’s genetic basis
• a social worker who can help you navigate the challenges of living with Huntington’s
• a physical therapist to address any mobility, strength, and coordination issues
• an occupational therapist to manage functional challenges to daily living
• a speech therapist for help with any speech and swallowing difficulties.

Useful information for people with Huntington’s

To learn more about Huntington’s disease, start with highly regarded healthcare providers, reputable organizations, and credible online resources. Trustworthy sources provide accurate and up-to-date information supported by scientific research and evidence.

In the U.S., the HDSA offers HD materials, resources, and support. The organization’s Centers of Excellence specialize in Huntington’s and provide a multidisciplinary approach to HD care.

The National Institute of Neurological Disorders and Stroke, the Hereditary Disease Foundation, and CHDI Foundation also offer information on Huntington’s.

Finally, Huntington’s Disease News offers current news and information about HD symptoms and treatments.

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Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.