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UNC Huntington Disease Program

Vision:

Collaborative care and clinical research network that creates sustainable professional-community partnerships delivers care that improves quality of life for patients, families, and communities drives the research generating new therapies for HD.

Mission:

Expert holistic care and research engagement for all patients and families affected by Huntington disease in the North Carolina area.

Care

Compassionate patient and family centered care for people impacted by Huntington disease

Care collaborations that support, educate and empower our colleagues

In-person, telemedicine (video) appointments, and e-consults available:

We provide:

  • Diagnostic consultations, including pre- and post-test genetic counseling.
  • Genetic counseling and testing for at-risk individuals.
    • Also called predictive testing, presymptomatic testing.
  • Neuropsychiatry symptom management plan consults.
  • General Huntington disease care plan consults.
  • Holistic symptomatic Huntington disease care for patients of all ages.
  • Care for caregivers.

Our Department of Neurology based team actively works with team members in Physical Medicine and Rehabilitation to provide neuropsychology, physical therapy, occupational therapy, and speech therapy care tailored to Huntington disease patients’ individual needs.

We partner with HD Reach to facilitate resource access across North Carolina.

Education

Healthcare Providers and Trainees

The UNC Huntington Disease Program offers training opportunities for all levels of professionals. Please contact Dr. Claudia Testa at ctesta@unc.edu regarding current opportunities.

Research

The UNC Huntington Disease Program is a Huntington Study Group site.

We are happy to connect families with clinical trials at UNC and across the region.

Contact Julianne Key keyj@neurology.unc.edu regarding current UNC-based clinical trials:

  • DIMENSION Sage-CIH-201
  • SURVEYOR Sage-CIH-202
Resources

Huntington’s Disease Society of America