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 1,400 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.
Traveling with Huntington’s disease requires more than packing a suitcase. It requires planning, patience, self-advocacy, and a deep understanding of my body. I love the idea of seeing new places, speaking at events, visiting loved ones, and saying yes to meaningful opportunities, but traveling while symptomatic means I have to be realistic about what my […]
The post Symptom management on the go: Tips for traveling with Huntington’s disease appeared first on Huntington's Disease News.
The 41st Huntington’s Disease Society of America (HDSA) convention kicks off today in Phoenix, bringing together a sold-out crowd of patients, caregivers, families, and researchers. Running through Saturday, the three-day annual event focuses on providing practical support for navigating life with Huntington’s disease, with some sessions set to be livestreamed for remote viewers. Conference registration […]
The post HDSA 2026: Annual convention unites community with message of hope appeared first on Huntington's Disease News.
UniQure plans to ask the U.S Food and Drug Administration (FDA) for accelerated approval of AMT-130 to treat Huntington’s disease in the next few months, after the agency dropped its request for a new clinical trial. The agency agreed in a recent meeting that the three-year analysis from two ongoing Phase 1/2 trials — one in […]
The post UniQure to seek AMT-130 approval as FDA agrees on path for drug appeared first on Huntington's Disease News.
Thank you to our generous sponsors:
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Griffin Foundation -
