Based on current estimates, 1,100 affected patients and 5,500 affected family members (at-risk children and caregivers) live in North Carolina. These estimates are based on recent studies done in Canada and the United Kingdom. The true prevalence of HD is believed to be much higher than estimated.
Huntington’s Disease is considered an uncommon disease, but lack of awareness and social isolation limit identification and medical care as much as prevalence.
Nationwide estimates predict that 7-15 out of every 100,000 people suffer from HD in the US; this is greater than the prevalence rates for ALS (Lou Gehrig’s disease) and Cystic Fibrosis.
North Carolina is a large state without high population urban areas, so HD patients and family members are spread throughout regions spanning more than 500 miles. Families often find that they must manage serious symptoms and other HD-related problems without expert help.
There are clinicians with the knowledge and experience to provide high quality care to HD families, located at Duke University, the University of North Carolina at Chapel Hill, and Wake Forest University. In collaboration with these providers, HD Reach is addressing the problem of access to care, information, and resources.