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.
Up to four years after a single dose of the experimental gene therapy ifezuntirgene inilparvovec (formerly AMT-130), people with Huntington’s disease who received the high dose showed slower disease progression than would be expected without treatment. That’s according to data from two long-term Phase 1/2 clinical trials, one in the U.S. (NCT04120493) and one in […]
The post Gene therapy tied to slower functional decline in Huntington’s at 4 years appeared first on Huntington's Disease News.
The first time I realized our kitchen had become a kind of care unit, I was standing by the sink watching my wife, Jill, pour iced tea. It was a quiet morning, the kind we used to move through without thinking. She reached for the pitcher, and her hand made a small, unintended circle in […]
The post Navigating the long-term care required with Huntington’s disease appeared first on Huntington's Disease News.
Some experiences stay with you long after you return home, and my recent trip to New Orleans for advocacy work was one of them. I arrived expecting to share my story, learn more about Huntington’s disease (HD), and connect with members of the HD community. What I experienced was something much deeper. The Huntington’s Disease […]
The post Harnessing the power of connection in the HD community appeared first on Huntington's Disease News.
Thank you to our generous sponsors:
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Griffin Foundation -
