Huntington Study Group

Huntington Study Group Accelerating treatments that make a difference for Huntington's disease. For more information, visit www.huntingtonstudygroup.org.

The Huntington Study Group (HSG), a not-for-profit organization founded in 1993 in Rochester, NY, and its wholly owned subsidiary, HSG Clinical Research, Inc., designs and conducts clinical trials through the world’s first and largest collaborative network of over 800 experts in Huntington’s disease at more than 130 HSG credentialed research sites worldwide. HSG is dedicated to improving the lives of people impacted by Huntington’s disease through research, education, and collaboration.

Save the Date for HD Across the Lifespan: HSG Clinical Care & Research SymposiumThis year, Huntington Study Group is pro...
02/23/2026

Save the Date for HD Across the Lifespan: HSG Clinical Care & Research Symposium

This year, Huntington Study Group is proud to host three regional symposiums bringing our HD community together in:

📍 Sacramento, CA | September 17–18
📍 Houston, TX | September 24–25
📍 Boston, MA | October 29–30

These meetings are a unique opportunity for pharmaceutical companies, interdisciplinary healthcare providers, research sites, and advocacy leaders to come together to jointly discuss regional and national opportunities in Huntington’s disease care and research.

By creating space for open dialogue and collaboration, we strengthen the continuum of care for HD patients, caregivers, and families.

Registration details coming soon for each region. We look forward to collaborating with you in 2026.

Are you a researcher or clinician in the HD field? We’d value your input!As we strengthen collaboration with our colleag...
02/23/2026

Are you a researcher or clinician in the HD field? We’d value your input!

As we strengthen collaboration with our colleagues at the European Huntington's Disease Network, we are revitalizing HSG Working Groups to maximize impact and reduce redundancy across global HD research efforts.

Your expertise helps shape:
• International collaboration
• Scholarly publications
• Congress presentations
• Advancements in HD research and care

If you are actively involved in HD research or clinical care, please take a few minutes to complete our survey, which will be open until February 27.

Link to survey: https://app.smartsheet.com/b/form/33612f602459426894503c374981f3cd

The February issue of HSG’s newsletter, Inside the Helix, is now available.We’re excited to share the latest updates fro...
02/12/2026

The February issue of HSG’s newsletter, Inside the Helix, is now available.

We’re excited to share the latest updates from HSG, including:
• New Executive Committee and Advisory Council leadership
• 7 HD-PACT fellowships awarded
• Upcoming 2026 regional symposia info
• Trial and research updates
• News on our working groups

Thank you for being part of our shared mission to advance Huntington’s disease research.

Download the full newsletter here:https://huntingtonstudygroup.org/wp-content/uploads/2026/02/February-2026-Newsletter.pdf

What role is AI (Artificial Intelligence) playing in Huntington’s disease today?We want to hear from clinicians, researc...
02/04/2026

What role is AI (Artificial Intelligence) playing in Huntington’s disease today?

We want to hear from clinicians, researchers, industry and families to better understand how AI is being used across the HD community.

Take our quick 5-minute, anonymous survey to help shape an upcoming HD Insights article on AI's role in HD research, care, education, and beyond.

The survey closes on Friday, February 6.

Link to survey: https://app.smartsheet.com/b/form/b43ca064f82944b8b90e9aa7dea0f1b0

The Huntington Study Group and Teva are launching a new research study on myHDstory® to better understand the burden of ...
09/29/2025

The Huntington Study Group and Teva are launching a new research study on myHDstory® to better understand the burden of Huntington’s disease (HD) chorea.

If you live with HD chorea or care for someone who does, you may qualify to take part in this one-time online survey. Help advance HD research and get compensated for your time.
🕐 30–45 minute one-time online survey
💳 compensation of up to $50 in the form a digital gift card
📲 Learn more and enroll at https://myhdstory.org/

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El Huntington Study Group y Teva están lanzando un nuevo estudio de investigación sobre myHDstory® para comprender mejor la carga de la enfermedad de corea de Huntington (HD).
Si vive con corea de HD o cuida a alguien que lo hace, es posible que reúna los requisitos para participar en este cuestionario en línea único. Ayude a hacer avanzar la investigación de HD y reciba una compensación por su tiempo.
🕐 Cuestionario en línea único de 30 a 45 minutos
💳 Compensación de hasta 50 USD en la forma de una tarjeta de regalo digital
📲 Obtenga más información e inscríbase en https://myhdstory.org/

The Huntington Study Group and Teva are launching a new research study on myHDstory® to better understand the burden of ...
09/29/2025

The Huntington Study Group and Teva are launching a new research study on myHDstory® to better understand the burden of Hutington’s disease (HD) chorea.

If you live with HD chorea or care for someone who does, you may qualify to take part in this one-time online survey. Help advance HD research and get compensated for your time.

🕐 30–45 minute one-time online survey
💳 compensation of up to $50 in the form a digital gift card
📲 Learn more and enroll at https://myhdstory.org/



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El Huntington Study Group y Teva están lanzando un nuevo estudio de investigación sobre myHDstory® para comprender mejor la carga de la enfermedad de corea de Huntington (HD).

Si vive con corea de HD o cuida a alguien que lo hace, es posible que reúna los requisitos para participar en este cuestionario en línea único. Ayude a hacer avanzar la investigación de HD y reciba una compensación por su tiempo.

🕐 Cuestionario en línea único de 30 a 45 minutos
💳 Compensación de hasta 50 USD en la forma de una tarjeta de regalo digital
📲 Obtenga más información e inscríbase en https://myhdstory.org/

08/27/2025

Connect. Learn. Share. Join us in Nashville on Oct 11 for HD Community Research Day, a free event for individuals and families impacted by Huntington’s disease. Learn more or register here: https://tinyurl.com/2mpb3cuw

This special day offers accessible updates on HD research, but just as importantly, it’s a chance to meet others living with HD, caregivers, advocates, and experts in the field. Whether you’re interested in the latest studies or simply want to connect with people who understand your journey, there’s something here for you. Together we’ll explore what’s new in HD, share experiences, and strengthen the bonds of this community. We welcome you to be part of the conversation in Nashville.

🚨 Final Call for Regular Abstract Submissions for the HD Clinical Research Congress! 🚨The regular abstract submission de...
07/07/2025

🚨 Final Call for Regular Abstract Submissions for the HD Clinical Research Congress! 🚨

The regular abstract submission deadline for the 2025 Huntington Study Group Annual Meeting is tomorrow — Tuesday July 8th at 11:00 PM ET!
Don’t miss your chance to present your work to a global audience of HD researchers, clinicians, and community leaders in Nashville.

📍 Event Dates: October 11–14, 2025
📍 Location: JW Marriott Nashville

Still finalizing your data? The late-breaking submission period will be open from July 17–31, 2025, for abstracts with emerging or time-sensitive findings.

🔗 Submit now: https://na.eventscloud.com/eSites/837726/Homepage
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📣🎉 We are pleased to welcome Dr. Erin Furr Stimming as the incoming Chair of the HSG Executive Committee!In this role, D...
06/02/2025

📣🎉 We are pleased to welcome Dr. Erin Furr Stimming as the incoming Chair of the HSG Executive Committee!

In this role, Dr. Furr Stimming will guide the Executive Committee in advancing HSG’s mission-driven strategies and initiatives. Her leadership and dedication to the HD community will be invaluable as we continue working to improve the lives of those impacted by Huntington’s disease.

"I’m honored to accept this role and to work alongside such passionate and talented colleagues,” said Dr. Furr Stimming. “Together, we will carry forward HSG’s mission and help shape a future with more hope and meaningful progress for the HD community.”

Today, on Clinical Trials Day, we recognize the incredible impact of research in driving progress and hope for the Hunti...
05/20/2025

Today, on Clinical Trials Day, we recognize the incredible impact of research in driving progress and hope for the Huntington’s disease community.

At the Huntington Study Group, we are deeply grateful to the participants, families, researchers, and study teams who make clinical trials possible. Your commitment brings us one step closer to meaningful treatments and, ultimately, a cure.

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95 Allens Creek Road, Building 1, Suite 132
Rochester, NY
14618

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The Huntington Study Group is a world leader in conducting high-quality clinical research studies, and educating healthcare providers in Huntington disease (HD). We have the first and largest HD clinical research network of over 600 active and compassionate investigators, coordinators, scientists and HD experts at over 120 HSG Credentialed Research Sites across the globe dedicated to seeking treatments that make a difference and improving the quality of life and outcomes for families affected by HD.