Huntington’s Disease Program
Since 1998, the UConn Health Huntington’s Disease Program has provided comprehensive, compassionate health care for Huntington’s disease (HD) patients and support for patients and families throughout Connecticut. We are the only clinic in the state that cares exclusively for HD patients. The HD program is part of the Department of Psychiatry and works closely with the Department of Neurology to provide multidisciplinary, individualized care for patients based on their needs.
Huntington’s disease is an inherited disease that affects about 30,000 people in this country. It typically runs in families. If an individual has a parent with HD, they have a 50% chance of inheriting the disorder. HD causes the nerve cells in the brain to die, resulting in difficulty with memory, mood, and muscle movement (chorea). There is no cure at present for HD. Many medications can treat symptoms. We provide a multidisciplinary team approach for each patient, and we also have a pre-symptomatic testing program for at-risk adults.
Evaluation and Treatment
Patient records are reviewed before the initial visit, and the team determines which provider would be best suited to see a particular patient. Each patient and family have unique medical and emotional needs that factor into the final care plan. We might make recommendations for treatment regarding personal or family counseling, physical or occupational therapy, psychiatric or neurological treatments, and home-based or long-term care.
We offer genetic counseling and HD gene testing at no charge to Connecticut residents. Our gene testing program follows the HDSA guidelines.
- Psychiatric assessment
- Neurological assessment of Huntington's disease symptoms
- Neuropsychological assessment
- Genetic counseling
- Education of clients and families
- Psychiatric care
- Neurological care of Huntington's disease symptoms
- Routine follow-up care
- Education of caregivers in effective behavioral interventions
- Assistance with entitlements and disability determination
- Liaison with home care agencies
- Monthly virtual caregivers’ support group
The UConn Health HD Program collaborates with Fresh River Healthcare in East Windsor to develop expertise in caring for the long-term care needs of this distinct group of individuals.
Our APRNs provide onsite evaluations, education, and family communication at the facility to maintain continuity of care for families who transition their loved ones from the HD clinic to Fresh River. For information, contact Robin Zingales-Browne at 860-679-4418.
The UConn HD Program is a member of the Huntington’s Study Group (HSG). This group, whose mission is to seek effective treatments that improve the quality of life for people affected with HD, has conducted over 35 clinical trials. We have participated in a number of these trials.
We are currently a site for Enroll-HD, which is a longitudinal, observational, multinational study. More than 20,000 have enrolled in this study worldwide.
Monday to Friday, 9 a.m. to 5 p.m.
10 Talcott Notch Road
Farmington, CT 06032
HD Caregiver Support Group
Meet Our Team
Andrea Gainey, M.S., LCGC
Kristen Vavrek, MSW, LCSW
Support HD Research
You can also support Huntington's Disease research with your tax-deductible donation. UConn Health serves as the primary resource to health care providers in Connecticut. Educational initiatives enable communities across the state to stay informed of treatments and care for people with HD. Clinicians and scientists are conducting cutting-edge research right here in Connecticut and collaborating with colleagues around the world.
Private giving provides a critical foundation to build the Huntington's Disease Program. Every gift brings us closer to finding a cure. The Huntington's Disease Program has several top funding priorities:
- Research support: Purchase laboratory equipment, supplies, and new technology; and hire top scientists.
- Clinical care support: Recruit and retain additional staff for clinical operations and care.
- Public service support: Disseminate new educational materials to patients, families, health care providers, and host symposia.
Your gift to the Huntington's Disease Program Fund (#22807) will provide essential support to strengthen UConn Health. Please visit the Foundation website to make your gift today! For more information about supporting the Huntington's Disease Program, please contact the Office of Development and Alumni Relations at 860-679-1122.
The UConn Health Huntington's Disease Program participates in Enroll-HD: A Prospective Registry Study in a Global Huntington's Disease Cohort (Enroll-HD). Enroll-HD is a worldwide Huntington's disease (HD) observational, multi-center study.