HDSA 2026: Annual convention unites community with message of hope
Live and virtual sessions dive into advocacy, clinical trials, and the latest research
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The 41st Huntington’s Disease Society of America (HDSA) convention kicks off today in Phoenix, bringing together a sold-out crowd of patients, caregivers, families, and researchers. Running through Saturday, the three-day annual event focuses on providing practical support for navigating life with Huntington’s disease, with some sessions set to be livestreamed for remote viewers.
Conference registration begins at noon MST today, followed by an orientation for first-time attendees at 4 p.m. MST. Regional meetups in the afternoon will allow U.S. attendees to connect with others from their geographic areas. After a 6 p.m. MST welcome reception, the convention’s family-friendly Team Hope Walk will begin at 8 p.m. MST to raise funds for HDSA and boost community awareness. Other walks occur across the country throughout the year.
Friday agenda and research updates
Friday’s events will begin with breakfast at 7:30 a.m. MST, followed one hour later by the opening ceremony presented by HDSA leadership and special guests.
Participants can choose from several morning sessions covering a wide range of topics, including:
- the ABCs of Huntington’s genetic cause
- the emotional toll on family members of people with Huntington’s
- how brain donation contributes to research efforts
- an update from uniQure about the path for regulatory approval of its experimental therapy AMT-130
- how to turn advocacy into action
An awards luncheon will recognize HDSA volunteers before the afternoon sessions. The afternoon panels and talks will discuss topics including:
- preparing for possible crises
- caring for the caregiver
- finding humor and joy in Huntington’s
- stigmas, misconceptions, and misdiagnosis
- the daily impact of chorea, the involuntary movements that are a hallmark symptom of Huntington’s
- estate planning and special needs trusts
The day will conclude with an HDSA National Youth Alliance talent show at 5:30 p.m. MST.
Saturday showcase and clinical trials
Saturday will bring another full day of activities, beginning with breakfast at 7:30 a.m. MST. An hour later, a research forum will highlight the latest findings of HDSA’s Clinical Trial Readiness Task Force, which has spent the last six months mapping how people with Huntington’s and their families experience clinical trials.
The first Clinical Trial Showcase will begin at 9:45 a.m. MST. During this session, representatives of pharmaceutical companies will cover various stages of clinical trials and new and emerging Huntington’s treatments.
In addition, the 11 a.m. MST sessions will cover topics such as:
- building effective care teams
- living with uncertainty
- navigating school and educational support for children with juvenile Huntington’s (onset before 20 years of age)
- results from undergraduate Huntington’s research projects supported by HDSA’s Donald A. King Summer Research Fellowship
The second Clinical Trial Showcase is scheduled for lunch, starting at noon MST. Afternoon sessions, beginning at 2 p.m. MST, will include:
- an ask-the-experts panel
- a presentation about the hidden costs of caregiving
- a discussion about the cultural aspects of Huntington’s and its effects on families with nontraditional structures
- presentations from two Berman-Topper Fellows, who are early-career scientists receiving HDSA funding for their research
The convention will conclude after a break with an awards dinner and gala beginning at 7 p.m. MST.
Throughout the event, support group meetings will provide opportunities for attendees to form connections. This includes groups for caregivers, people with juvenile Huntington’s, and at-risk family members who haven’t experienced symptoms.
The convention’s presenting sponsor is Teva Pharmaceuticals, which markets Austedo and Austedo XR (deutetrabenazine) for treating Huntington’s-associated chorea. Other sponsors include uniQure and various pharmaceutical companies that market Huntington’s-approved therapies or are developing new potential treatments.
Note: The Huntington’s Disease News team is providing virtual coverage of the Huntington’s Disease Society of America’s annual conference June 25-27. Go here to see the latest stories from the conference.
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