Huntington’s disease resources for patients and caregivers

Huntington's disease is an inherited genetic neurodegenerative disorder that causes a gradual loss of neurons (nerve cells) in the central nervous system. It mainly affects parts of the brain that control movement, thinking, emotional regulation, and behavior.

People with Huntington’s disease can experience a variety of symptoms related to a loss of neurons in these regions of the brain:

• Involuntary movements of the limbs, trunk, and neck, such as twisting, jerking, grimacing, or rapid blinking
• Cognitive changes that can cause difficulty with problem solving, organization, planning, and memory
• Mood disorders like depression, anxiety, and obsessive-compulsive disorder
• Behavioral changes, such as agitation, irritability, and aggression

Huntington’s disease is a progressive condition, with symptoms that become more numerous over time, and new symptoms that emerge over time. While onset typically occurs in a person’s 30s and 40s, it can occur at younger and older ages.

There is no cure, and treatment focuses on symptom management and quality of life—medications to reduce involuntary movements and psychiatric symptoms, physical and occupational therapy, speech therapy, and psychiatric and social support for people with the condition, families, and caregivers.

Disease-modifying therapies, including gene therapies, are under development, and some may be available through clinical trials.

If you or a loved one is living with Huntington’s disease, it helps to know where to look when you have a question or are trying to make decisions about treatment—where to learn about the condition, what to consider when exploring genetics counseling, where you can connect with others whose lives have been affected by this disease.

The resources below can help you get started.

Huntington's Disease Society of America (HDSA)

The website for the HDSA is an excellent place to start when seeking information about this condition. There are pages on the genetics, symptoms, and stages of Huntington’s disease, as well as information on living with this condition day-to-day, covering topics like symptom management, nutrition, and healthcare planning.

If you’re looking for a healthcare team or specialists, the HDSA Centers of Excellence is a comprehensive list of medical centers that provide specialized treatment for Huntington’s disease. You’ll also find links to HDSA chapters throughout the United States, many of which organize local support groups.

Huntington's Disease Youth Organization (HDYO)

The HDYO project provides age-appropriate resources, education, and support specifically for young people impacted by Huntington's disease, including children and young adults who are at risk, may already be showing symptoms, or have a parent or family member who has been diagnosed with HD. You’ll find information on summer camps and retreats, online forums to ask questions, and other ways to get involved in the Huntington’s disease community. The site also features information on research and clinical studies.

Enroll-HD

Enroll-HD is a clinical research platform for the world's largest observational study for individuals and families affected by Huntington's disease, with tens of thousands of participants across more than 23 countries. Visit the site to learn about current research studies, research news, and how participating can advance scientific understanding and medical treatment for Huntington’s disease.

Family Caregiver Alliance (FCA)

FCA provides a number of services to caregivers and people living with conditions that affect physical and cognitive functioning. Their website features resources and guides specific to Huntington's disease, addressing the unique challenges faced by caregivers.

The resource library covers many essential caregiving topics, including self-care for caregivers. There is also the "Caregiver College" video series, covering practical skills many caregivers will need to learn as Huntington's disease progresses.