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.
-
Check our calendar for upcoming events: Both in-person and virtual. You can register here!
-
Check out our store for all kinds of HD gear. It's one of the easiest ways to become an advocate!
-
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.
-
People served through our family system model of care.
15,000
-
People affected by HD in the US including 1,400 in NC.
41,000
-
Americans at-risk for HD, including 8,000 in NC.
200,000
Latest HD News & Research Updates
Skyhawk Therapeutics Announces Expansion of its Global Pivotal FALCON-HD Clinical Trial for SKY-0515 in Huntington’s Disease to the United States, Canada and the United Kingdom
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.
Attending the 2026 Huntington’s Disease Society of America (HDSA) Convention in late June in Phoenix, Arizona, gave me the opportunity to meet professionals working to improve care for people affected by Huntington’s disease (HD). One of those professionals was Elizabeth Ferluga, MD, director of movement disorders at the telehealth care platform Synapticure. Whenever I meet […]
The post Bringing specialized neurological care home to the HD community appeared first on Huntington's Disease News.
Motion data collected by a smartwatch may offer a more objective way to monitor worsening involuntary movements in people with Huntington’s disease than clinic visits alone, a study found. Researchers in the U.K. and Switzerland developed a digital tool to estimate the severity and progression of chorea, a hallmark Huntington’s symptom characterized by involuntary, jerky […]
The post Smartwatch data help detect Huntington’s disease progression appeared first on Huntington's Disease News.
Disability benefits is one of those topics that my wife, Jill, and I never thought much about until Huntington’s disease forced it into the center of our lives. Before Jill was diagnosed as gene-positive in 2018, I vaguely pictured disability as something that happened to other people, a label that meant you were confined to […]
The post Huntington’s disease reshaped our understanding of disability benefits appeared first on Huntington's Disease News.
Thank you to our generous sponsors:
-
Griffin Foundation -
