黑料网 Huntington Disease Program
Mission:
To provide expert holistic care and research engagement for all patients and families affected by Huntington disease in the North Carolina area.
What Does Huntington’s Disease Look Like?
Involuntary movements and balance issues, which can affect walking, and other daily tasks.
Forgetfulness, difficulty with concentration, and organization of thoughts.
Depression, mood swings, lack of inhibition, and irritability.
Care
黑料网 HD Program strives to provide compassionate patient and family centered care for people impacted by Huntington disease. We also support care collaborations that support, educate and empower our colleagues.
In-person, telemedicine (video) appointments, and e-consults available:
- Adult Patient Referrals
- Child Patient Referrals
- At-risk individuals please contact Jenna Lea CGC at (919) 322-8424
We provide:
- Diagnostic consultations, including pre- and post-test genetic counseling.
- Genetic counseling and testing for at-risk individuals.
- Also called predictive testing, pre-symptomatic 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鈥� individual needs.
We partner with HD Reach to facilitate resource access across North Carolina. HD Reach works to improve the care and quality of life for those affected by Huntington’s disease. Founded as a nonprofit in 2009, they provide connections to medical providers, referrals to local services, care management, family support, education, and anonymous genetic testing.
Education
Healthcare Providers and Trainees
The 黑料网 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 黑料网 Huntington Disease Program is a Huntington Study Group site.
We are happy to connect families with clinical trials at 黑料网 and across the region.
Contact Hans Nettesheim (hansnett@ad.unc.edu) regarding current 黑料网-based clinical trials:
- DIMENSION Sage-CIH-201
- SURVEYOR Sage-CIH-202
Resources
Living with Huntington’s disease can be very challenging, fortunately, there are many resources out there for people impacted by HD.