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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Sonya * Living With HDMy 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
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People affected by HD in the US including 1,400 in NC.
41,000
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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.
Living with Huntington’s disease (HD) has taught me a great deal about healthcare, both the kind that makes you feel supported and the kind that leaves you questioning whether you were truly heard. As a Black woman living with HD, I have learned that being believed is not always guaranteed. I wish more healthcare workers […]
The post What I wish healthcare workers knew about racial bias and rare disease appeared first on Huntington's Disease News.
In final 15-month study data, people with early-stage Huntington’s disease treated with SKY-0515, Skyhawk Therapeutics’ investigational oral therapy, showed improvements in function, movement, and cognition. That’s according to final results from Skyhawk’s Phase 1/2 clinical program, which included the registered Phase 1 trial (ACTRN12624000602527). The study included about two dozen Huntington’s patients, with assessments reported […]
The post Oral therapy may slow progression in early-stage Huntington’s disease appeared first on Huntington's Disease News.
My wife, Jill, who is gene-positive with Huntington’s disease (HD), has always believed that if something matters to you, you should pay attention to the people in charge of it. Lately, that has meant watching U.S. lawmakers much more closely. As someone living with a rare disease, she sees every healthcare decision through a painfully personal […]
The post For families with Huntington’s, every vote in Congress matters appeared first on Huntington's Disease News.
Thank you to our generous sponsors:
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Griffin Foundation -
