HDSA’s Centers of Excellence (COEs) provide multidisciplinary care services to families affected by Huntington’s disease, including neurology, psychology, genetic counseling, social services, physical and occupational therapy, and more. Each Center undergoes rigorous yearly review by an expert advisory committee of doctors, researchers, and family members. Centers of Excellence are evaluated not only on their ability to provide care, but to participate in and even design cutting-edge clinical studies that inform our understanding of HD.
The online Letter of Interest form to become a 2020 COE is available now.
HD Trials & Family Stories Featured in Print and Podcast
Roche Pharmaceuticals (known as Genentech in the US) recently embarked upon a Phase 3 trial of its huntingtin-lowering therapy, RG6042. A Phase 3 trial is the last step required before approval of a drug by the FDA, and usually involves hundreds of participants (in this case, 660).
Dr. Juan Sanchez-Ramos, director of the HDSA Center of Excellence at the University of South Florida, was featured in a podcast this week in which he talks about the Roche study and what genetic therapies mean for the HD community.
The Boston Herald also featured the story of a patient with HD and how ongoing and upcoming trials are giving her hope for the future. Meanwhile, an article in The Guardian presented the challenging issues of genetic testing, inheritance, and how families share information about Huntington’s disease.
As pivotal studies continue and gene therapies are a real possibility on the horizon, we’re encouraged that Huntington’s disease is seeing increased visibility in the news.
