Summary
- Thank you for attending HDSA’s 38th Annual Convention!
- Participate in HD Research: HD Data Collection Initiative, HD Trialfinder, and more
- HDF Research Webinar: June 20th
Thank you for attending HDSA’s 38th Annual Convention!
HDSA was delighted to welcome over 800 attendees to this year’s Convention in New Orleans, LA. From a Team Hope walk parade, to presentations from leading pharmaceutical researchers and HDSA research fellows, and everything in between, our first fully in-person Convention since 2019 did not disappoint! Thank you to all who attended and stay-tuned to those who were unable to be there in person—a selection of Convention session recording will be available online later this summer! We will notify you here when they are available.
Participate in HD Research: HD Data Collection Initiative, HD Trialfinder, and more
Deciding whether to participate in research and what types of research studies are right for you are very personal decisions. Whether you are joining a clinical research study to test a new drug candidate for HD, showing up to your annual Enroll-HD visit, donating biological samples to further the study of HD, or participating in online research surveys from the comfort of your own home, there are so many ways to be involved in HD research, many of which were discussed at this year’s Convention.
HDTrialfinder is a great place to start when deciding what research studies are right for you. This clinical trials matching platform run by HDSA helps users discover which actively recruiting HD research studies they may be eligible for and includes drug studies, biomarker and imaging studies, quality of life studies, and registries. Make an account here to get started.
Additionally, HDSA recently announced the launch of the HD Data Collection Initiative in partnership with Rare-X. A representative from Rare-X joined HDSA’s Convention to share more about this opportunity. The goal of this project is to engage individuals with HD and their care partners to build a high-quality HD natural history study that can be used to accelerate HD research. To learn more, read the press release and community letter published on HDSA.org. If you are interested in learning more about how you can get involved as an HD community member, email HDVoices@hdsa.org.
HDF Research Webinar: June 20th
Join the Hereditary Disease Foundation on Tuesday, June 20, from 12pm to 1pm ET for the next HDF Research Spotlight Webinar featuring Drs. Terence Gall-Duncan, Izabella Pena and Srivathsa Magadi. These young, HDF-funded scientists will share their exciting research on HD. Register to attend here.
