Care experience for HD patients and families

The Griffin Foundation established the Huntington Disease (HD) Care Improvement Project with the Huntington Study Group (HSG) to help understand and improve the care experience for HD patients and families. The founder of the Griffin Foundation is also a caretaker for his wife who has HD. Finding the needed medical care and outreach support proved to be very difficult for both of them. This frustrating experience focused the Foundation on helping to improve the care and outreach needed by HD patients, families, and caregivers.

Your participation in this brief survey will help us collect important information from you about what is needed to improve care for HD, and to share this information with HD care providers, researchers, and organizations including the Huntington’s Disease Society of America (HDSA), HDBuzz, HDYO, Help4HD, HD Drug Works, and HD Reach.

If you are someone with HD, or a family member, friend or caregiver of a person living with HD, please take a few minutes to complete this survey. We need to understand YOUR experience – YOUR journey – and YOUR knowledge to help us improve access to quality care for HD patients and families in the United States. If you have any questions please email us at

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