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.
Years ago, my wife, Jill, who is gene-positive for Huntington’s disease, was visiting a relative in a nursing home when she noticed a troubling interaction between a patient and a staff member in the hallway. She could have kept walking. Instead, she stepped in to calm things down and offered to help. Because Huntington’s is […]
The post I hope someone will notice when my gene-positive wife needs help appeared first on Huntington's Disease News.
There is something unsettling about living with a disease that people seem to take more seriously when you are struggling than when you are doing well. I have lived with Huntington’s disease (HD) for more than a decade. During that time, I have learned how to manage my symptoms, advocate for my needs, and make […]
The post I shouldn’t have to fall apart for people to believe the seriousness of my HD appeared first on Huntington's Disease News.
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.
Thank you to our generous sponsors:
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