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  • HD Resources & Community

Resources for Every Step of Your HD Journey

A curated collection of trusted HD advocacy organizations, clinical trial information, and community support — vetted by our team and grounded in years of working alongside the people behind them.
  • Where to Turn

Trusted Organizations in the HD Community

There are many services, programs, and resources for the HD community — and navigating them can feel overwhelming. We've curated this list based on direct experience working with each organization. From connecting you to your nearest HD clinic, to helping you navigate clinical trials, to making sure you're connected to others who understand — please don't hesitate to reach out so we can help you on your HD journey.

A note on this list: These are options for you to consider — not recommendations or endorsements. Logo placement does not indicate endorsement of HD Genetics by any of the organizations listed. If you’d like more information about any resource below, our team can either share what we know directly or connect you to the right person.

HD Advocacy Organizations

Five trusted nonprofits providing education, support, financial aid, and community for HD families across the country and around the world.

HDSA — Huntington's Disease Society of America

hdsa.org

The largest HD organization in the United States. HDSA provides community services, education, advocacy, and research support — from local chapters to a national network of social workers, support groups, and Centers of Excellence.
  • 56 HDSA Centers of Excellence + 11 partner sites nationwide
  • National Convention every June (2026: June 25–27, Phoenix, AZ)
  • National Youth Alliance (NYA) for HD family members under 29
  • Disability program with attorney Allison Bartlett
  • Virtual support groups by gene status and age range

Help4HD International

help4hd.org

A nonprofit dedicated to educating the world about Huntington’s disease and Juvenile HD. Operationally run by professionals who are also HD family members.
  • HIPE family conferences (in-person and virtual) throughout the year
  • Help4HD LIVE — weekly podcast covering HD topics
  • Help4HD TV — weekly YouTube show for HD families
  • Financial relief programs for HD families — including the genetic testing fund in partnership with HD Genetics
  • 2026 events: Virtual HIPE (Feb 21), Baltimore (Apr 24–25), Los Angeles (July), Des Moines (Sept 11–12)

HDYO — Huntington's Disease Youth Organization

hdyo.org

An international nonprofit supporting, educating, and empowering young people up to 35 years impacted by HD. Co-founded by B.J. Viau (View), HD Genetics’ founder.
  • Educational content about HD written for young people by young people
  • Educational content for parents on talking to their children about HD
  • Ambassador program connecting young adults globally
  • Youth Camp 2026 (August, outside Washington D.C.) for ages 16–25
  • Active Facebook group for young people under 35 + YouTube channel

HD Reach

hdreach.org

Improves the care and quality of life for those affected by Huntington’s disease through care management, family support, education, and connections to medical providers. Our partner for monthly Office Hours.

  • Full-time care navigator for individualized care plans
  • Monthly Meetups throughout North Carolina
  • Virtual monthly support group (open nationwide, in partnership with Vanderbilt)
  • Game Over HD video game club and HD Book Club
  • Annual family conference (April 17–18, 2026 outside Raleigh, NC)
  • Monthly Office Hours co-hosted with HD Genetics — first Wednesday of every month at 12:30 PM EST via doxy.me/HDgenetics

HelpCureHD

helpcurehd.org

Provides PGD-IVF financial grants for individuals who carry the HD gene and want to have a child free of the HD mutation. Inspired by Lee Smith, mother of MLB pitcher Joe Smith.

  • PGD-IVF grants for reproductive options to prevent HD risk in offspring
  • Specific funding cycles — check website for current grant openings
  • Annual fundraising gala (typically September)

HD Research & Clinical Trial Resources

Organizations driving HD research forward — from clinical trial coordination to scientific journalism that translates complex research into plain language.

HSG — Huntington Study Group

huntingtonstudygroup.org

A boutique Clinical Research Organization (CRO) conducting HD clinical trials worldwide. HD Genetics’ official partner for our Clinical Trial Connection service.

  • Network of credentialed clinical trial sites worldwide
  • myHDstory® — online research project capturing patient voices
  • HD Insights Magazine on HD community topics
  • Biennial Annual Conference (next: Fall 2027)

HD Buzz

hdbuzz.net

HD research news and updates written in plain language by scientists for the global HD community. One of the best places online to stay current on HD clinical trial developments.

CHDI Foundation

chdifoundation.org

A privately-funded, not-for-profit biomedical research organization devoted entirely to Huntington’s disease — focused on developing drugs that slow HD progression and provide clinical benefit to patients.

HDF — Huntington's Disease Foundation

hdfoundation.org

Focuses on curing Huntington’s disease and supporting affected families. Provides Postdoctoral Fellowships and Grants to researchers advancing HD treatment discovery.

HD Observational Studies

Observational studies don't test treatments — researchers simply observe participants and track health outcomes. Many studies welcome gene-positive, gene-negative, and at-risk participants. Participating is one of the most impactful ways to give back to the HD community.

Enroll-HD

enroll-hd.org

The world’s largest observational study for HD families — over 20,000 participants across Europe, North America, Australasia, and Latin America. Annual half-day visits track HD progression in fine detail.

HDClarity

HDClarity.net

A multi-site observational study for people already participating in Enroll-HD. Requires prior HD genetic testing (positive or negative results both qualify). Annual visits include a lumbar puncture. Travel and lodging covered.

myHDstory®

myhdstory.org

An online research platform sponsored by HSG that helps researchers understand how HD affects patients, care partners, and those at genetic risk. Create your profile and contribute to research from home — no clinic visits required.

CHANGE-HD

University of Iowa — CHANGE-HD

A brain imaging study for young people ages 6 to 30 who are at-risk for HD (with a parent or grandparent affected).

Prevent-HD

neurology.wisc.edu/prevent-hd

A study to refine the tools used in clinical trials to measure treatment effectiveness — before HD impacts daily life. Requires prior genetic testing to participate.