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.
The U.S. Food and Drug Administration (FDA) has agreed to review uniQure’s application seeking accelerated approval of AMT-130, a gene therapy candidate for Huntington’s disease that is now called ifezuntirgene inilparvovec. “The FDA’s acceptance of our [application] for review marks an important milestone for the Huntington’s disease community,” Matt Kapusta, uniQure‘s CEO, said in a […]
The post FDA grants priority review to gene therapy for Huntington’s appeared first on Huntington's Disease News.
My wife, Jill, who is gene-positive with Huntington’s disease (HD), and I often talk about what we owe the future stewards of the healthcare system. It weighs on us as a family affected by a rare disease. When you spend a lot of time in doctors’ offices and waiting rooms, you start to realize how […]
The post Investing in education is key to improving future healthcare appeared first on Huntington's Disease News.
There is something powerful about standing in a room and telling the truth about what it means to live with Huntington’s disease (HD). Every time I share my story, I am reminded that advocacy is not just about speaking. It is about being seen, making space, and helping change the way people understand this disease. […]
The post How I use my voice as an HD patient advocate to create change appeared first on Huntington's Disease News.
Thank you to our generous sponsors:
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Griffin Foundation -
