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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!

  • Register for upcoming webinars, or view past recorded webinars. Check out our library!

  • Check out our store for all kinds of HD gear. It's one of the easiest ways to become an advocate!

  • Olivia * Living with JHD
    Olivia * Living with JHD

    My name is Olivia and I’m 17 years old with Juvenile Huntington’s Disease. I was diagnosed right before my 13th birthday a few years after my father. Living with this terrible disease has changed so much of my life. However, I still attend school and am a senior this year. I also participate in Girl Scouts. My favorite thing is PT where I get to ride Fritz a horse at hippotherapy. I also have a service dog Larry who helps me with walking, retrieving items and can go get my mom if I need help. Everyday I fight this disease.

  • People served through our family system model of care.

    15,000

  • People affected by HD in the US including 1,000 in NC.

    41,000

  • Americans at-risk for HD, including 5,500 in NC.

    200,000

November 14, 2025

The Time is NOW! Join the Fight to Bring Hope to HD Families: Urge the FDA to Uphold Accelerated Approval!

 

HDSA, Help4HD, HD Reach, HDF and HDYO have joined forces on a petition directly to the FDA.

Key Asks of the FDA:

  • Honor Your Previous Guidance: Fully uphold the previously agreed-upon accelerated approval pathway for AMT-130, including the use of external control data from natural history studies.
  • Recognize the Urgency: Acknowledge the dire, unmet medical need in the HD community and act with the expediency that Breakthrough Therapy and RMAT designations demand.
  • Expedite Review: Make the review and approval of AMT-130, and any other future HD therapies, a top priority to get this potentially life-altering therapy to patients without further delay.

Sign the Petition Today! Don’t forget to confirm your email to make it count.

 

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