Who We Are

Welcome to the Huntington's Disease Society of America's North Carolina Chapter. We are a part of HDSA's South Region.

 

Our Mission

To improve the lives of everyone impacted by Huntington's disease by providing support, driving advocacy, and accelerating research.

Our Vision

A world where Huntington’s disease is treatable and care is accessible for all.

What is HD?

Huntington’s disease (HD) is an inherited neurological disease that causes progressive breakdown of movement, thinking, and behavior. Symptoms worsen over time and can affect a person’s ability to work, communicate, and care for themselves. Today, approximately 41,000 Americans are living with symptoms, and more than 200,000 are at risk of developing the disease. Each child of a parent with HD has a 50 percent chance of inheriting the gene. There is currently no cure, but research is accelerating the development of better treatments and improved care.

About HDSA

The Huntington’s Disease Society of America (HDSA) is the leading national nonprofit dedicated to improving the lives of everyone impacted by Huntington’s disease. Through community events, education, advocacy, specialized care, and research advancement, HDSA connects individuals and families to trusted resources and works to ensure no one faces Huntington’s disease alone.

Across the United States, HDSA currently supports:

• 50+ volunteer-led chapters and affiliates

• Huntington’s disease research

• HDSA Centers of Excellence

• Social workers

• Support groups

• Education programs

• Youth and young adult programs

• Advocacy efforts

• Extensive community education and awareness through Team Hope walks and more than 300 special events annually

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HDSA Centers of Excellence in our area

The HDSA Centers of Excellence provide an elite multidisciplinary approach to Huntington's disease care and research. HDSA currently has 54 Centers of Excellence across the United States. Our region is fortunate to have these institutions as part of this outstanding program:

Duke University (NC)

At these world-class facilities, patients benefit from expert neurologists, psychiatrists, therapists, counselors and other professionals who have deep 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.

For the exact address of each HDSA Center of Excellence, click here for our Locate Resources page

Contact

For local news, events, and updates please contact our North Carolina Chapter.
NC Chapter email: northcarolina@hdsavolunteer.org 

HDSA South Regional Development Officer
Annelizabeth Atie
P. (202) 239-3408
E. aatie@hdsa.org

To contact the HDSA national helpline, please call 800-345-HDSA. The HDSA national helpline is open from 9:00 a.m. - 5:00 p.m. EST Monday through Friday.