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.

✨ New Year, New Commitment! ✨🧬 As we welcome in the new year, we invite you to make a meaningful resolution to participa...
01/01/2025

✨ New Year, New Commitment! ✨

🧬 As we welcome in the new year, we invite you to make a meaningful resolution to participate in Huntington's disease research in 2025.

🧑‍💻From joining a study to helping spread awareness, your involvement helps make a difference in the lives of those impacted by HD and brings us one step closer to finding a cure.

Visit myHDstory.org today to learn more and get involved.

💻 HSG's online study, LEAD-HD, aims to deepen our understanding of HD By joining the study, you become an integral part ...
12/23/2024

💻 HSG's online study, LEAD-HD, aims to deepen our understanding of HD By joining the study, you become an integral part of accelerating progress in HD research.

➡️ Register today at myHDstory.org

Participate in the Project AWARE 2.0 Survey to help provide the HD research community insight into the knowledge, motiva...
12/18/2024

Participate in the Project AWARE 2.0 Survey to help provide the HD research community insight into the knowledge, motivations, and concerns of families regarding participating in clinical research.

Visit myHDstory.org or download the mobile app!

🎉Congratulations to Emma Wajswasser on her new book, ‘Bloopy the Alien Learns about Huntington’s Disease’! 📖This heartfe...
12/17/2024

🎉Congratulations to Emma Wajswasser on her new book, ‘Bloopy the Alien Learns about Huntington’s Disease’!

📖This heartfelt story aims to help educate readers of all ages about the importance of empathy and understanding for those impacted by HD.

🌟Emma’s work is a wonderful resource for sparking compassionate conversations.



Erin Paterson

📖 Emma Wajswasser is a 12-year-old student from Toronto whose grandpa is living with HD. She wrote this book because she wanted to educate kids and adults about the disease and how to interact with people in a kind and compassionate way. This is not just a book about Huntington’s disease; it is a book about having empathy and understanding for any older adults in our lives.

🔗 Read the full story here ➡https://bit.ly/49WrkrL

12/16/2024

❄️Season’s Greetings from the Huntington Study Group!❄️

Wishing you and your loved ones joy, peace, and good health this holiday season!

📣Did you know HSG has an online research platform called myHDstory®?🤳This means you can participate in research when it'...
12/10/2024

📣Did you know HSG has an online research platform called myHDstory®?

🤳This means you can participate in research when it's convenient for you! Use the links below to watch the overview video and learn more about our current Huntington's disease studies.

💻Watch the video: https://bit.ly/41g6H7A
➡️Learn about current studies: https://bit.ly/3ZxkEfL

myHDstory® is an online direct-to-patient research platform developed and owned by Huntington Study Group (HSG). The goal of the platform is to break down ba...

🌟Our photographer captured some fantastic moments from  ! Here’s a sneak peek at a few of the incredible speakers who he...
12/03/2024

🌟Our photographer captured some fantastic moments from !

Here’s a sneak peek at a few of the incredible speakers who helped make this event a success.

Stay tuned for more photos and videos coming your way!

📷: Alli Mullikin Photography

ONLINE STUDY: LEAD-HDSTATUS: Enrolling adult participantsBy sharing your experience, you play a critical role in helping...
12/02/2024

ONLINE STUDY: LEAD-HD
STATUS: Enrolling adult participants

By sharing your experience, you play a critical role in helping researchers better understand the natural history of !

Register today at myHDstory.org or download the mobile app.

🎉 Our CEO was in the ROC* this week, so of course we surprised him with cake and a balloon! Wishing a very happy birthda...
11/22/2024

🎉 Our CEO was in the ROC* this week, so of course we surprised him with cake and a balloon! Wishing a very happy birthday to Dr. Daniel Claassen, whose leadership and vision inspire us - we're grateful for all you do! 🥳🎂

*Rochester, NY - location of HSG's headquarters 😄

🎉Thank you to the HSG 2024 cohort of our ENGAGE-HD program!🎉  The ENGAGE-HD (Educate, Nurture, Gather, Acquire knowledge...
11/20/2024

🎉Thank you to the HSG 2024 cohort of our ENGAGE-HD program!🎉

The ENGAGE-HD (Educate, Nurture, Gather, Acquire knowledge, Grow, Excite) initiative was created by HSG members Drs. Jee Bang, Jody Corey-Bloom, and Erin Furr Stimming to address the growing need for professionals specializing in Huntington’s disease (HD). By ENGAGE-ing the next generation of researchers and practitioners, HSG is working to close the gaps in HD research and patient care. 🌍💡 Through expert-led education and collaboration, we're building a stronger community committed to scientific breakthroughs and better care for HD patients.

If you’d like to learn more or participate in the future, please email us at [email protected]

🎉From the bottom of our hearts, thank you to everyone who made HSG 2024 a spectacular success! We are so grateful for an...
11/13/2024

🎉From the bottom of our hearts, thank you to everyone who made HSG 2024 a spectacular success! We are so grateful for and proud of our network and our shared commitment to accelerating treatments that make a difference for Huntington's disease.

Thank you, thank you, thank you.

🌟500+ Attendees
🌟10+ countries
🌟12 Sponsors
🌟5 Advocacy Groups
🌟17 Exhibitors

🎉It's HSG 2024 Family Day!🎉🌟We're so excited and honored to welcome the HD community to today's event. We hope everyone ...
11/09/2024

🎉It's HSG 2024 Family Day!🎉

🌟We're so excited and honored to welcome the HD community to today's event.

We hope everyone leaves today's sessions feeling inspired, connected, with a better understanding of HD research, and full of hope for the future.

💜From the bottom of our hearts, thank you to all of our attendees, event sponsors, exhibitors, and the University of Cincinnati team for their warm welcome and support of this event.

🐯Did you hear about the surprise guest at  ?! Who Dey from the Cincinnati Bengals brought his energy to lunch and snagge...
11/08/2024

🐯Did you hear about the surprise guest at ?! Who Dey from the Cincinnati Bengals brought his energy to lunch and snagged some fun pics!

🟩There were 85 research abstracts on display during yesterday evening's poster and networking reception at  ! 🎉Thank you...
11/08/2024

🟩There were 85 research abstracts on display during yesterday evening's poster and networking reception at !

🎉Thank you to our Publications Committee and HSG team member Lynn Denise who spent months reviewing the submissions, preparing them for publication, and planning the session!

➡️The posters are on display for the rest of the day and the digital versions are available online here: https://content.iospress.com/articles/journal-of-huntingtons-disease/jhd249004

🌟Congratulations to this year's award recipients!🌟We are so grateful for your leadership, hard work, and dedication to H...
11/07/2024

🌟Congratulations to this year's award recipients!🌟

We are so grateful for your leadership, hard work, and dedication to HD, and we are proud to celebrate your achievements.

🎉Welcome to day  #1 of HSG 2024 in Cincinnati, Ohio!🎉
11/07/2024

🎉Welcome to day #1 of HSG 2024 in Cincinnati, Ohio!🎉

🟣🟠🟢We're ready for you,  !🟢🟠🟣Meet us on the third floor tomorrow to check in and grab some swag!
11/06/2024

🟣🟠🟢We're ready for you, !🟢🟠🟣

Meet us on the third floor tomorrow to check in and grab some swag!

🙌The HSG crew has arrived and we're ready to put on a great conference! 🙌➡️Have a question or need assistance? Staff wil...
11/06/2024

🙌The HSG crew has arrived and we're ready to put on a great conference! 🙌

➡️Have a question or need assistance?
Staff will be wearing 🟣purple🟣 lanyards so we're easy to spot!

Address

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.