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Huntington’s Disease Support Groups Online

Huntington’s disease affects whole families, including the people who do not know whether they carry the gene. ShareWell has free online support groups for people living with serious illness and the people who love them, where you can talk openly.

Live groups available daily.

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Topic context

Understanding huntington’s disease

Huntington’s disease, or HD, is an inherited disorder that affects movement, behavior, mood and thinking. Because it runs in families, several generations can be affected at once, and relatives live with the question of their own risk.

Why it helps

How peer support helps with huntington’s disease

Peer support can help with Huntington’s disease because few people in the community understand it, which leaves families isolated. A group offers company from people who know what living with uncertainty is like.

Inside the room

What huntington’s disease groups often cover

Deciding whether or not to have genetic testing
Living at risk and the stress of not knowing
Changes in mood and behavior in someone you love
Caring for more than one family member

ShareWell groups are peer support and do not give medical advice, so please keep working with your care team on anything about diagnosis or treatment. If you are in crisis, call or text 988 to reach the Suicide & Crisis Lifeline.

Good fit for

Who these groups may help

People living with Huntington’s disease
People who are at risk, whether or not they have been tested
Spouses, children and caregivers

Keep exploring

Frequently asked questions

Is there an online support group for Huntington’s disease?

There is no HD group on ShareWell at this time. Families affected by Huntington’s are welcome in the groups on this page, which are for people dealing with serious illness in general, and in the gentle sessions too.

Do I need to have been tested to join?

No. The decision to test is personal, and nobody in a group will push you either way.

Is there room for spouses and adult children?

Yes. Caregivers and family members are welcome with their own account.

Where can I find medical information about Huntington’s disease?

The Huntington’s Disease Society of America (hdsa.org) has family resources and a helpline at 800-345-4372.