The Huntington’s Disease Society of America (HDSA) is expanding its HDSA Center of Excellence network of comprehensive care clinics with 56 grants totaling $2,029,759. In addition to the 56 grant funded facilities, eleven regional partner sites were also named, ensuring expert HD care at 67 distinct medical facilities in 36 states across the nation and Washington, DC.
HDSA Centers of Excellence are multi-disciplinary care teams with expertise in Huntington’s disease that share an exemplary commitment to providing family-focused care and enabling clinical research for this complex, rare, neurodegenerative disease. The expansion from 55 grants in 2022 to 56 grants in 2023 comes from the addition of Dartmouth – Hitchcock Medical Center in New Hampshire as the newest HDSA awarded clinic. Additionally, University of Massachusetts Chan School of Medicine has been named a new HDSA Center of Excellence Partner Site to expand resources to families in Central and Western Massachusetts. Launched in 1998, the HDSA Centers of Excellence network has grown from just 20 sites as recently as 2015.
“The Huntington’s Disease Society of America is committed to providing HD families access to the best possible care for Huntington’s disease,” said Teresa Srajer, Chair of HDSA’s National Board of Trustees. “By continuing to expand the reach of the HDSA Centers of Excellence network, HDSA ensures that more HD families can find the care and support they need as they navigate the many challenges of this devastating rare disease.”
The HDSA Centers of Excellence provide an elite team approach to Huntington’s disease care and research. Patients benefit from expert neurologists, psychiatrists, therapists, genetic counselors, social workers and other professionals who have extensive experience working with families affected by HD and who work collaboratively to help families plan the best HD care program throughout the course of the disease. Applications to become an HDSA Center of Excellence are open to all clinics in the United States who have demonstrated experience caring for HD affected families and share HDSA’s commitment to high-quality, comprehensive care and access to clinical research.
Louise Vetter, President & CEO of HDSA added, “We are grateful for the dedication and compassionate support that the staff at these clinics provide HD affected families. It is because of the incredible generosity of the HD community and our partners that we are able to continue to increase access to the very best in HD care.”
Huntington’s disease is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities during their prime working years and has no cure. Every child of a parent with HD has a 50/50 chance of inheriting the faulty gene that causes HD. Today, there are approximately 41,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease. The symptoms of HD are described as having, ALS, Parkinson’s and Alzheimer’s – simultaneously.