HD Reach Information

HD Reach is working to improve the care and quality of life of those affected by Huntington’s disease. Founded as a nonprofit in 2009, we provide connections to medical providers, referrals to local services, care management, family support, education, and anonymous genetic testing. Huntington’s Disease (HD) is a progressive genetic disorder of the brain. HD causes great suffering not only in those it strikes, but also in their families. Despite promising research and unprecedented financial support for drug development, medical care for HD patients and their family across North Carolina has been poor, inaccessible, and poorly coordinated. HD sufferers and their families in North Carolina without access to expert HD clinicians receive little more than sympathy. After generations of misunderstanding and inadequate care, it is no wonder many families fear a loved one being identified with HD. A new diagnosis brings to mind the common misconception that there is nothing anyone can do to help. The North Carolina Center for the Care of Huntington’s Disease (NC-CCHD), now known as HD Reach, was formed in 2009 to address the pressing need for a communication network connecting HD patients and their families with experts and available resources. The mission to improve access to quality care, education and social assistance for North Carolinians has been achieved in urban areas associated with these tertiary care centers. The services provided include streamlined access to quality providers, crisis intervention services, case management, timely diagnosis and disability approval, family education and support, attention to the behavioral and psychiatric symptoms of HD and guidance through the long term and hospice care process. Improving quality of life through the delivery of these services has been achieved.