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Helping Families with Huntington's Disease

HD Reach is working to improve the care and quality of life for those affected by Huntington’s disease. Founded as a nonprofit in 2009, we provide connections to medical providers, referrals to local services, care management, family support, education, and anonymous genetic testing.


 

We’re here for you. Call or Email: 919.803.8128 or info@hdreach.org

If you’d like us to know how to help you better, let's be friends. HD Reach is a private nonprofit organization. All information collected is held in strict confidence. All HD Reach services are provided through community based funding, donations, or private pay. 

  • Sonya * Living With HD
    Sonya * Living With HD

    My name is Sonya Bailey, I am 54 years old and was diagnosed at 49 with Huntington's disease. I first learned about Huntington's when my father was diagnosed with it during the 90s. Huntington's at first was a difficult pill to swallow, but now I am grateful because it's allowed me to be closer to my grandkids and to be part of the awesome community at HDREACH – the sense of community, resources, and friendship they give our family makes me not feel alone in my journey. I always look forward to our monthly gatherings to hang out with everyone.

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  • People served through our family system model of care.

    15,000

  • People affected by HD in the US including 1,400 in NC.

    41,000

  • Americans at-risk for HD, including 8,000 in NC.

    200,000

Latest HD News & Research Updates

Latest Huntington's Disease News

Huntington's Disease News, a Bionews site, provides clear, reliable news, research updates, and real-world perspectives to help people living with Huntington's disease and their caregivers feel more informed, confident, and supported throughout their care journey. Information is not meant to replace or provide medical advice.

The acronym HDSA is seen on a close-up illustration of nerve cells.

Understanding underlying disease processes, reframing challenges, and using self-care techniques can help a person caring for someone who has Huntington’s disease build a sustainable caregiving practice, according to social worker Amy Lemke, PhD. Caring for a Huntington’s patient is like captaining a boat through a storm, Lemke, clinic coordinator at the University of Iowa’s HDSA […]

The post HDSA 2026: Reframing can help caregivers navigate challenges appeared first on Huntington's Disease News.

Two people are shown working in a lab with HDSA on the wall behind them.

Several late-stage clinical trials are now recruiting participants to test whether three experimental oral therapies can slow the progression of Huntington’s disease, with active or planned sites in the U.S. Representatives from three pharmaceutical companies described the development status of those therapies in a clinical trial showcase at the 41st Huntington’s Disease Society of America […]

The post HDSA 2026: Oral therapies take center stage in ongoing Huntington’s studies appeared first on Huntington's Disease News.

A researcher holds a vial of blood while looking at a rack of filled vials.

SOM Biotech is preparing to launch a global late-stage clinical trial to evaluate whether SOM3355, its experimental oral therapy, can safely and effectively ease movement problems and other symptoms in people with Huntington’s disease. If positive, data from the upcoming Phase 3 trial, which is expected to start early next year, will be used to […]

The post HDSA 2026: New oral therapy headed for pivotal Huntington’s trial appeared first on Huntington's Disease News.

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