Huntington’s Disease - Patient Resource Page

NOTE: The key to health success is working with your team of medical professionals. This page and Bubl Health act as supplements to care from a qualified and licensed physician.

Curated by Zubin Park

Start here - General Huntington’s Disease Information

Mayo Clinic

Huntington’s Disease Society of America

National Institutes of health

Huntington’s Disease Association

Johns Hopkins

Understanding Treatment Options

Mayo CLinic

Cleveland Clinic

National Institute of Neurological Disorders and Stroke

Stanford

American Society of Gene and Cell Therapy

Northwestern Medicine

Programs and Resources

HDSA National Youth Alliance

Hdsa Support Groups

Inspire

HDA

Huntington’s Disease Facebook Group

HDreach Support Groups

Coping and Support Resourses

Huntington’s Society of Canada: Loss and Grief

HDA: Occupational Therapy

HDSA: Talking Huntington’s With Kids

UCDAVIS: Self Care for Family Caregivers

UCDAVIS: Everyday Living with Huntington’s

UCDAVIS: Communicating with Children about Huntington’s

International Hunington’s Association

HDSA: Long-Term Care

Questions to ask your doctor

How should I go about testing myself for Huntington’s?

What are the options for treating my Huntington's disease with medication or therapy?

What treatment do you think would be best for me?

How will my symptoms change in the future?

What are the benefits and side effects of medications that I'll need to take?

Will my treatment interfere with any drugs that I'm now taking?

Will I need any nutrition treatment or counseling?

Are there support services available to help me through treatment?

What help might be available if I can no longer care for myself at home?

Will treatment control my symptoms?

Are there any clinical trials I should consider?

What are the risks of my passing Huntington's disease to my children?

Should I meet with a genetic counselor before thinking about having a child?

DISCLAIMER: Bubl Health website, videos, and other media do not provide medical diagnosis, treatment, or advice. Although we strive to give up-to-date information, no guarantee to accuracy is made. Information contained here may NOT be used as a substitute for the advice of an appropriately—qualified and—licensed physician or other health care provider. The information provided here is for informational purposes only.