May Awareness 2026: More than HD – Be Part of It.

A global awareness and engagement campaign for Huntington’s Disease launches this May

The European Huntington Association (EHA) and the International Huntington Association (IHA) are joining forces again, launching a joint global campaign this May to mark Huntington’s Disease Awareness Month, under the theme “More Than HD – Be Part of It.”

This year has been declared by the United Nations as the International Year of Volunteers, so we are taking advantage of this to not only raise awareness about Huntington’s Disease (HD), but also inspire meaningful community involvement.

At its core, the campaign challenges common perceptions of HD by highlighting a simple but often overlooked truth: people affected by Huntington’s Disease are more than their diagnosis – and everyone has a role to play.

A campaign built on awareness and action

Structured across the month of May, the campaign unfolds in two phases, combining storytelling, education, and community activation.

The “More Than HD” pillar focuses on awareness, offering an honest and human look at what living with Huntington’s Disease really means. Through personal stories and lived experiences, the campaign moves beyond clinical definitions to present the full reality of individuals and families affected by HD.

The “Be Part of It” pillar shifts from awareness to action. It invites the HD community to take part by volunteering with HD associations.

Key campaign moment: global webinar

To kick off the first part of our campaign, we are hosting an interactive webinar, “Get Involved: The power of volunteering in the HD Community” taking place on 7 May 2026. 

We invite you to be part of it whether you want to start getting involved with the HD community, you are already involved or if you are just curious about our community. Throughout this webinar we will:

• Share real experiences of volunteering
• Highlight different ways to get involved
• Address common concerns and barriers
• Foster a sense of belonging and collective purpose

This webinar is open to everyone interested in getting involved with us or who is curious about our work! Insights gathered during the webinar will shape campaign content throughout the month.

You can join us via this link: https://bit.ly/41UHzlV. 

From awareness to participation

As the campaign progresses, content will:

• Increase public understanding of Huntington’s Disease;
• Highlight both visible and invisible aspects of the condition;
• Address common barriers to volunteering, such as lack of time or uncertainty about how to start;
• Showcase real stories from community members and volunteers;
• Provide clear and accessible pathways for involvement.

The campaign will culminate on 15 May, marking Huntington’s Disease International Day, 

Building a stronger global community

By aligning awareness with action, “More Than HD – Be Part of It” aims to strengthen connections across the global HD network and empower individuals to contribute in ways that feel meaningful and achievable.

Because every story shared, every hour volunteered, and every action taken is a step forward.

Every seed we plant is a step towards change.

Why May?

May was chosen as the month to shine a spotlight on Huntington’s disease for a meaningful reason. The origins trace back to May 18, 1992, when then U.S. President George H. W. Bush officially proclaimed May as National Huntington’s Disease Awareness Month. This milestone came just one year before the discovery of the HD gene, a groundbreaking achievement led by Dr. Nancy Wexler and her team in Venezuela. 

Since that historic moment, May has become a global time of reflection, action, and unity. Over the past three decades, incredible strides have been made – from deepening scientific understanding to amplifying the voices of those affected. May is now recognized around the world as a time to come together, raise awareness, and push forward with hope and determination.