Huntington's Disease Awareness Month: 6 ways to get involved

May is Huntington’s Disease Awareness Month, and May 15 is International HD Awareness Day.

Communities around the globe will be raising awareness of Huntington’s disease (HD) in many ways. Families, caregivers, healthcare professionals, and advocates take part to acknowledge the strength, adaptability, and bravery of people living with the condition.

Here are some ways people can get involved in Huntington’s Disease Awareness Month.

For Huntington’s Disease Awareness Month in May 2026, people can use the hashtag #LetsTalkAboutHD on social media to share experiences, stories, research updates, and fundraising activities related to Huntington’s disease.

The Huntington’s Disease Society of America (HDSA) encourages people to share personal stories, videos, and photos to increase HD awareness. Other hashtags people can use on social media include:

People can also use apps like Twibbon to add ribbons, banners, and frames to their profile pictures on platforms like Facebook, Instagram, LinkedIn, and Bluesky.

Various local activities and events, including walks, will take place throughout the year.

To find an event in their area, a person can enter their zip code on the HDSA events page.

In addition to attending Team Hope walks, people can support HD research by attending educational seminars, holding and attending fundraisers, and making donations.

People can consider volunteering at one of more than 50 volunteer-led organizations across the United States.

Volunteers support and provide resources for their communities through activities such as hosting fundraising events, support groups, and education days.

At these events, people with HD can learn about research updates, disability benefits, and insurance. HD community experts often lead these events.

Throughout May at HD events, or year-round, people can wear purple and blue and decorate with purple and blue ribbons and lights to raise awareness.

There are many educational and recreational events across the country, and if there is not one nearby, a person can set up their own using information available from the HDSA.

Advocating for Huntington’s disease involves not only raising awareness of the condition but also influencing legislation and working with organizations such as the Huntington’s Disease Coalition for Patient Engagement (HD-COPE).

HD-COPE is a global program that aims to give people living with HD, their families, and their caregivers a voice in HD clinical research and trials.

It is important for researchers to consider many perspectives, and involving the people most directly affected by HD can lead to robust positive outcomes.

The HDSA offers support groups through different chapters, affiliates, regions, and centers of excellence.

The leaders of support groups may be medical professionals, people living with HD, or relatives or friends of those living with HD. The HDSA provides training for all group leaders and assigns a mentor for each leader.

To find local HD support groups, a person can enter their zip code into the HDSA’s support group tool.

Huntington’s Disease Awareness Month matters because it offers a specific time to familiarize people with the condition. Increased awareness can help reduce stigma, boost fundraising for research and patient support, and urge people to take action.

Awareness months can also help people learn about important issues that may arise and promote community support by encouraging people to share their personal stories.

People may sometimes feel isolated and alone in their health conditions, but awareness days and months can help them feel seen, valued, cared for, and included.

Throughout May, people can participate in various events to raise awareness of Huntington’s disease (HD).

HD Awareness Month can help support people living with the condition and their families and raise funds for important medical research.

The Huntington’s Disease Society of America encourages people to use the hashtag #LetsTalkAboutHD when sharing personal stories, videos, and photos on social media. International HD Awareness Day is observed on May 15th every year.