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.
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Check our calendar for upcoming events: Both in-person and virtual. You can register here!
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Check out our store for all kinds of HD gear. It's one of the easiest ways to become an advocate!
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Jeremy * At Risk for HDMy name is Jeremy, and Huntington’s disease has deeply impacted my family. My father, James, passed away on October 3, 2025. He was a devoted father, husband, and grandfather who always tried his hardest to be present, even as HD affected his movement and mind. My mother, Donna, is the hero of our family. She cared for my dad, managed everything at home, and supported me through my own HD testing.
I am forever grateful for both of my parents. Thank you, Mom, for everything.
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People served through our family system model of care.
15,000
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People affected by HD in the US including 1,000 in NC.
41,000
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Americans at-risk for HD, including 5,500 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.
Women with Huntington’s disease are more likely to experience irritability and to be unemployed or working part-time than men with the neurodegenerative condition, according to a small, single-center study in Austria. Men and women with Huntington’s showed similar genetic burden, age at disease onset, and motor symptom severity, suggesting that sex-related differences in Huntington’s may […]
The post Genetic burden similar, but HD’s social impact hits women harder appeared first on Huntington's Disease News.
Several years ago, at a family reunion, I discovered something remarkable about my wife Jill’s approach to difficult conversations that has stayed with me ever since. This discovery has become even more important as Jill deals with the challenges of being gene-positive with Huntington’s disease (HD). At the reunion, Jill sat with her extended family, engaging […]
The post The power of constructive dialogue in life with Huntington’s appeared first on Huntington's Disease News.
I can feel it before anyone says a word. It’s in the pause that comes after I mention Huntington’s disease. It’s in the quick scan of my body, my hands, my face, the way I shift my weight like they’re looking for proof. It’s in the softened voice, the head tilt, the “Oh wow. You’re […]
The post I insist on being seen as I am, not as someone else’s story appeared first on Huntington's Disease News.
The U.S. Food and Drug Administration (FDA) has asked uniQure to conduct an additional clinical trial before submitting an application seeking approval of its experimental gene therapy, AMT-130, for Huntington’s disease. That’s according to a press release from uniQure announcing the final minutes of a Type A meeting held with the agency on Jan. 30 […]
The post FDA requests additional clinical trial of Huntington’s gene therapy AMT-130 appeared first on Huntington's Disease News.
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