You don’t have to be alone on your HD journey
Your care team may include professionals who are experts in different areas of medicine and healthcare.
You may benefit from finding a care team with experience in managing HD. Some care settings have specialized care teams who are experienced at working with families affected by HD.
Care teams can vary in size and scope.
Your care team may include:
Neurologist
Specializes in disorders of the brain and nervous system
Psychiatrist
Specializes in mental health
Social Worker
Helps guide you and your family with information and support
Nurse Specialist
Manages cases, provides counseling and support
Genetic Counselor
Can help families make decisions about HD genetic testing
Mental Health Therapist
Specializes in symptoms related to mood and emotions
Speech Therapist
Provides support for speech and swallowing difficulties
Physical Therapist
Helps with balance, strength,
mobility, and exercise
Occupational Therapist
Helps with activities of daily living, like eating, driving, and home modifications
The goals of your care plan are personal to you
Together, you and your care team can create a plan that can best support your unique situation and goals. You have a say in deciding what your goals are and how you plan to achieve them.
For example, the goals of treatment for HD symptoms could be:
Reducing symptoms
Improving function
Maximizing quality of life
Need help starting the conversation with your care team?
Download tips on how to talk about your symptoms and learn about a treatment option for HD chorea.
Actor portrayals
Building your community
Family, friends, and the members of the HD community can provide support beyond your care team.
Support groups and individual mentorship opportunities are available across the US and online.
It can be a great relief to connect with other people and families affected by HD. They can provide emotional support, valuable advice, and a sense of community.
Some support groups include:
Help 4 HD International
An education and advocacy nonprofit that operates Help 4 HD Live!, an international radio program that connects people with HD and advocates to education, resources, and more.
Huntington’s Disease Society of America (HDSA)
The US-based HDSA is one of the world’s premier HD education, advocacy, and research nonprofit organizations.
Huntington’s Disease Youth Organization (HDYO)
The HDYO is the only global nonprofit dedicated to supporting young people affected by HD.
HD Reach
HD Reach is a US-based nonprofit offering a comprehensive range of services, including education, genetic testing, service referrals, assistance with care management, and more to families affected by HD.
Actor portrayalsThere is support and community for HD caregivers, too
It can be easy to feel overwhelmed by the pressures of caring for a loved one with HD—and yourself. But you are not alone.
The HD community is strong and active, and support groups and mentorship opportunities are available to help caregivers and families too.
Sign up for HD info
Learn about treatment options, tips for living with HD, and useful links and resources.
Sign upAfter your HD diagnosis
Read “After Your HD Diagnosis” for tips and resources for people and families affected by HD.
Download brochure (opens in a new tab)