There are many services, programs and resources for the HD community. Your HD Genetics team is composed of experts dedicated to helping find what’s best for you. From connecting you to your nearest HD clinic, to helping you navigate clinical trials, to making sure you’re connected to speak with others in your position — Please don’t hesitate to reach out to us so that we can help you on your HD journey.
HD Advocacy Organizations
Below are links to the primary HD advocacy organizations who support, educate and empower individuals in different ways.
Logo placement does not indicate an endorsement of HD Genetics by the organization.
This list is a compilation of resources and education for your awareness. None of the information listed below is intended as a recommendation or an endorsement; all are options for you to consider as an individual and to choose what may be best for you. If you’d like more information regarding any of the resources below, please reach out to the HD Genetics team. We can either provide you that information directly or connect you to the right person who can.
HD Genetics Resource Guide
Regardless of your results, HD Genetics is here to help you at any point during your HD journey. The resources below are hopefully valuable to you &/or your family. If you have any questions about the information provided in this guide, or if you are looking for additional info, we are here to help!
Wes Solem, Director of Genetic Services
Certified Genetic Counselor
Text / call: 704-343-8743
BJ Viau (View), Founder of HD Genetics and HD family member
BJ’s HD Column: www.huntingtonsdiseasenews.com/negative-to-positives-b-j-viau/
Stay up to date with HD Genetics through their social media:
|CAG Repeat Size
|Risk of HD Status
|26 or less
|Normal Unaffected by HD; no risk of developing HD
|27 – 35
|Intermediate Likely unaffected by HD; low risk of developing HDCAG repeat unstable & susceptible to expansion when passed to offspringOffspring may be at risk for developing HD
|36 – 39
|Reduced penetrance Individual may or may not develop HD symptomsCAG repeat unstable & susceptible to expansion when passed to offspringOffspring at risk for HD
|40 and above
|Full penetrance Always associated with HD
National Huntington’s Disease Patient Advocacy Organizations
(in alphabetical order)
Help 4 HD • help4hd.org
- Mission is to educate the world about Huntington’s disease and Juvenile Huntington’s disease. The aim is to serve the HD community and provide information, education, and resources.
- Host regional in-person (& virtual) family conferences (called HIPE) throughout the year.
- Virtual HIPE Day February 24th
- Houston, TX April 27th
- Virtual June TBA
- Aug 25 Chicago (details coming soon_
- Annual Family Symposium October 4-5, 2024 Washington DC
- Host Help 4 HD LIVE, a weekly podcast covering a wide variety of topics for HD families.
- Host Help 4 HD TV, a weekly YouTube show covering a wide variety of topics for HD families.
- Have financial relief programs for HD families who are in desperate need including a program / partnership with HD Genetics to offset cost of genetic testing.
- Operationally run by professionals who are also HD family members.
- Contact Executive Director, Katie Jackson, [email protected]
Help Cure HD – helpcurehd.org
- Created to help those suffering from HD and to aid in the journey to find a cure.
- HelpCureHD was inspired by Lee Smith, mother to Joe Smith, professional pitcher for Major League Baseball teams, who was diagnosed with Huntington’s disease in 2012.
- Provides financial grants for PGD-IVF, a reproductive option to prevent HD risk in offspring.
- HelpCureHD has specific financial grant cycles; the current cycle will open sometime in Spring 2024.
- HepCureHD’s holds an Annual Gala fundraiser in Houston, TX typically in September.
HDSA • hdsa.org • Huntington’s Disease Society of America
- HDSA is dedicated to improving the lives of everyone affected by Huntington’s disease. From community services and education to advocacy and research, HDSA is the world’s leader in providing help for today, hope for tomorrow for people with Huntington’s disease and their families. In the battle against Huntington’s disease no one fights alone.
- National network of chapters, affiliates, social workers, support groups, volunteers and centers of excellence. Find resources here.
- HDSA Centers of Excellence are designated places with high standards of care and treatment for people impacted by HD. Currently, there are 56 centers and 11 partner sites across the country who each have a team of healthcare professionals who are leaders in HD care.
- Provides no-cost telehealth counseling services for HD families via Amwell.
- Over the course of a year, you (or any member of your family) may schedule up to 8 visits with a licensed social worker or psychologist through this free program provided by HDSA.
- HDSA’s National Convention is the largest gathering of HD families and stakeholders each year. This year’s conference is in Spokane WA May 28 – June 1, 2024. Scholarships are available with application deadline of March 1, 2024.
- The National Youth Alliance (NYA) program supports young people from HD families who are under age of 29 through support, education and empowerment. The NYA also hosts a full-day track for young people on the Thursday of national convention weekend. The NYA also hosts regional retreats throughout the year in various locations. NYA Day link: https://fs22.formsite.com/hdsa/ekbeeykn2z/index
- Connect with a HDSA Youth Social Worker directly: https://apricot.socialsolutions.com/document/edit/id/new/form_id/106
- Youth and Young Adult Mentorship Program (ages 35 and younger) https://nya.hdsa.org/Mentorship-Program
- Publishes a weekly blog to provide updates on research.
- Provides information concerning the Social Security disability process, health insurance, and legal resources by connecting you with Allison Bartlett, a disability attorney who specializes in guiding people with rare, chronic conditions, like Huntington’s disease. Allison is HDSA’s Manager of Disability Program. Note Allison is out on maternity leave through Spring 2024.
- Virtual Support Groups:
- Recently tested gene positive Second Monday of the month at 7pm EST
- Recently tested gene negative Fourth Thursday of the month at 7pm EST
- Age range 18-24 Third Tuesday of the month at 6pm EST
- Age range 25-35 Third Wednesday of the month at 7pm EST
- Contact social worker Maryann Emerick, [email protected]
HDYO • hdyo.org • Huntington’s Disease Youth Organization
- An international non-profit supporting, educating, and empowering young people up to 35 years, impacted by HD.
- Lots of educational content about HD written for young people by young people (e.g., genetics, basics about HD, having children, taking care of a parent, etc.).
- Lots of educational content for parents on how to talk to their children about HD.
- Ambassador program is an opportunity to get engaged with other young adults from around the world to advocate, educate and connect others.
- HDYO is hosting a Young Adult retreat, August 11-15 at Camp St. Charles in Maryland. Camp is for individuals 18-25 years old and more info about applying for camp can be found here: https://www.hdyo.org/a/771-2024-north-american-camp
- First ever in-person young adult congress took place in Glasgow, Scotland in March 2023 and will host a 2025 Young Adult Congress to be announced soon!
- Active Facebook group to connect & support young people under the age of 35.
- Have a YouTube channel with lots of educational videos. Youtube.com/@HDYOFeed
- Main contact: Executive Director, Jenna Heilman, [email protected]
HD Reach • hdreach.org
- HD Reach works to improve the care and quality of life of those affected by Huntington’s disease.
- Provides connections to medical providers, referrals to local services, care management, family support, education, and anonymous genetic testing.
- Full-time care navigator to help personalize your individualized plan of care.
- Hosts annual education day in Raleigh, NC. The upcoming event is on March 9, 2024. https://conference.hdreach.org/
- Monthly Meetups throughout the state of North Carolina to help the HD community connect.
- Virtual monthly support group available to all within the United States in partnership with Vanderbilt.
- Hosts Game Over HD video game club and HD Book Club monthly
- HD Reach & HD Genetics host a monthly virtual meetup for anything related to genetic testing. Join our teams the 1st Wednesday of each month at 4pm EST via doxy.me/hdgenetics
- Main contact: Community Outreach Specialist, Erika Boulavsky, [email protected]
Social Media Groups & Threads
There are a lot of social media groups or online threads where others impacted by HD come to support each other and share information. With anything on the internet, please make wise decisions in what you share, but also with which information you choose to accept as true and false. To confirm anything you learn on the internet, please feel free to reach out to the HD Genetics team.
Facebook Group: Huntington’s Disease Genetic Testing (this group was created by HD Genetics as a place for people to specifically talk about genetic testing)
Facebook Group: CureHDWeWontBeSielnt
Facebook Group: Huntington’s Disease Youth Organization Hangout
Facebook Group: Huntington’s Disease Support Group
Facebook Group: Huntington’s Disease Youth Organization Parent Support Space
Facebook Group: Caregiver Support Group
Facebook Group: Huntington’s Disease Carers Support Group
Reddit Channel: Huntington’s Disease
Huntington’s Organizations Working on Clinical Trials and Treatments
HSG • huntingtonstudygroup.org • Huntington Study Group
- A boutique Clinical Research Organization (CRO) that conducts clinical trials and provides programs that impact research and care specifically for Huntinton’s disease.
- myHDstory® is an online research project sponsored by HSG. It will help understand how Huntington disease (HD) affects patients, care partners, and those at genetic risk for HD. myHDstory® was created as a research platform to enable people impacted by Huntington’s disease to report their symptoms and voice their priorities. Click here to create your online profile and accelerate HD research: https://www.myhdstory.org/
- A network of clinical trial sites around the world that typically run Huntington’s clinical trials. A list of their trial sites and locations can be found here: https://huntingtonstudygroup.org/hsg-credentialed-sites/
- HSG’s Annual Conference is in Cincinnati, OH November 6-9. Family day is Saturday November 9th and HD Genetics is on the planning committee…join us!
- Produces HD Insights Magazine about topics of interest in the HD community https://huntingtonstudygroup.org/hd-insights/
HD Buzz • hdbuzz.net
- HD research news written in plain language.
- Content is written by scientists for the global HD community.
- One of the best places online to stay up-to-date on high level details of clinical trials happening in HD.
CHDI Foundation • chdifoundation.org
- Privately-funded, not-for-profit biomedical research organization devoted to a single disease – Huntington’s disease.
- Mission is to develop drugs that will slow the progression of Huntington’s disease and provide meaningful clinical benefit to patients as quickly as possible.
HDF • hdfoundation.org • Hereditary Disease Foundation
- Focuses on curing Huntington’s disease and its devastating consequences to individuals and families with the disease.
- Provides Postdoctoral Fellowships and Grants to researchers to advance the discovery and development of treatments for Huntington’s disease and other brain disorders.
Huntington’s Disease Clinical & Observational Trials
Staying up to date on all of the clinical trials is difficult as the landscape is ever-changing. If you are interested in learning more about clinical or observational trials, please contact the HD Genetics team and we can provide some education about studies and connection to trials sites that can help you learn if you might qualify for an enrolling study.
To find the latest details about any clinical or observational trial, you can visit www.ClinicalTrials.gov and type in “Huntington’s Disease” in the search bar.
HD Genetics has partnered with the Rocky Mountain HD Center of Excellence to offer clients and their families a no-cost clinical trial consultation. HD Genetics can conncet you to Liza Heap, clinical trial coordinator, who can talk you through all of the available clinical and observational trials offered today and coming soon. If you or your family members are interested in participating, Liza can provide the necessary information to see if you qualify. Ask anyone on the HD Genetics team to get connected.
Pharmaceutical and Biotech companies with current clinical trials for Huntington’s disease (in alphabetical order):
- Annexon – likely will be initiating a Phase 3 trial in late 2024.
- Genentech/Roche – currently running and recruiting for a Phase 2 trial called GENERATION2 HD.
- Prilenia – completed a phase 3 trial in 2023 with medicine, Pridopodien, currently analyzing data. Will potentially submit to the FDA for approval in 2024.
- PTC Therapeutics – currently running a Phase 2 trial limited right now to Europe. Hopefully a Phase 2 or Phase 3 trial will be available in the USA in late 2024 or 2025.
- SAGE Therapeutics – currently running and recruiting for a Phase 2 trial in sites across the USA.
- uniQure – currently running and recruiting for a Phase 2 trial in sites across the USA.
- VICO Therapeutics – currently running a phase 2 trial limited right now to Europe.
- Wave Life Sciences – currently running a phase 2 trial limited right now to outside of USA.
Approved HD medicines:
- Neurocrine – recently got approval for their chorea medicine, Ingrezza.
- Teva – got approval for their chorea medicine, Austedo.
These studies don’t test potential treatments. Instead, researchers observe participants on their current treatment plan and track health outcomes. Most of these studies allow for people who have tested negative and also people who are still at-risk to participate as well as people who are gene positive. Participating in observational trials are a great way to give back to the HD community!
Enroll-HD – www.enroll-hd.org
- Enroll-HD is the world’s largest observational study for Huntington’s disease families—currently more than 20,000 people are taking part in Europe, North America, Australasia, and Latin America.
- Monitor how the disease happens in people and how it changes over time in very fine detail with the same tests and assessments around the world
- Researchers can use the huge data and biosample collection to learn more and come up with new ways to effectively treat HD.
- Anyone can participate from an HD family regardless of their genetic status.
- Study visits are typically once a year and last about a ½ day not including travel to study site.
- To find a ENROLL-HD study site near you, visit this link.
myHDstory® – https://www.myhdstory.org/
- An online observational research project sponsored by HSG.
- It will help understand how Huntington disease (HD) affects patients, care partners, and those at genetic risk for HD. myHDstory® was created as a research platform to enable people impacted by Huntington’s disease to report their symptoms and voice their priorities. Click here to create your online profile and accelerate HD research: https://www.myhdstory.org/
- The ChANGE HD Study is a brain imaging study that began at the University of Iowa. Our research focuses on young people ages 6 to 30 who have a family history of Huntington’s Disease (HD).
- HD has long been considered an adult onset disease. However, research has shown that brain changes are evident before motor symptoms begin. In fact, the gene responsible for HD plays a role in brain development and is present throughout the lifespan. With gene knockdown therapy showing promise for the treatment of HD, it is essential to understand how removing or disabling the gene could impact brain development.
- Who can participate? Young people who are between the ages of 6 and 30 and are at risk for HD are eligible to participate in this study. “At risk” means someone who has a parent or grandparent who has HD.
- Where can you participate?
- Vanderbilt University, Nashville, TN
- University of Iowa, Iowa City, IA
- Columbia University, New York, NY
- Children’s Hospital of Philadelphia and University of Pennsylvania
- University of Texas Health, Houston, TX
- University of California Davis, Sacramento, CA
Prevent-HD – www.neurology.wisc.edu/prevent-hd
- A research study to help develop and refine the tools that can be used in clinical trials to measure the effectiveness of treatment before the disease impacts daily life. Prevent-HD wants to build a case for testing these treatments much earlier in people at risk for HD.
- Starting treatment sooner may help delay the start of symptoms or slow down the progression of the disease. Some scientists think that treatments may be more likely to work when the brain is still healthy, rather than later in the disease when many brain cells are gone.
- Only one location currently accepting participants: Madison, WI
- Must have genetic testing to participate. To see if you qualify, reach out to [email protected] or call 608-890-4040, or ask HD Genetics for an introduction.
You can also find a list of other non-clinical studies listed on HDSA’s website found here. Many of these are online surveys that graduate students are conducting to help us learn more about HD.