Your Voice Matters: Sharing Experiences to Strengthen HD Care

One of the most common questions I see from people in the Huntington’s Disease (HD) community is, “Which HD clinic should I go to?” Families are constantly looking for guidance from others who have “been there” to understand what each clinic offers. While many HD clinics across the United States provide outstanding care, there hasn’t been a clear way to capture and compare those experiences. Until now, and that’s where you come in to help.

But first, let me share how we got here. Over the last few years, I’ve had countless conversations with a group of Huntington’s Disease (HD) advocates about how we can accelerate research and fill important gaps in community support. This led to the creation of HD-PACE (Huntington’s Disease Patients Accelerating Clinical Endeavors), which is an independent group of HD advocates working together to speed up progress in HD research and care.

Through our ongoing conversations with different HD stakeholders, including patients, caregivers, doctors, researchers, and industry partners, we realized that one area needing more attention is the HD clinic experience. While many people have access to excellent care, others struggle to find the right clinic or don’t know what to expect from their visits.

That’s why we developed this HD Clinic Experience Survey. We want to better understand what’s working well and where improvements can be made. Our goal is to highlight clinics that are providing great experiences while also identifying opportunities for growth. By sharing these insights, we hope to help patients and families make more informed decisions and strengthen the overall standard of HD care in the United States.

As someone personally impacted by HD, I know how important it is for our community to have access to reliable, first-hand information. We can learn from one another about what each HD clinic provides and where we can do better.

The survey is completely anonymous and takes about 15 minutes to complete. You can help by taking the survey and sharing it with your family, HD friends, local support group, or on social media. Each person who takes the survey adds to our understanding of the clinic experience. Every voice counts!

The survey is open to anyone 18 years or older in the United States who has visited an HD clinic in the past two years for a regular appointment, an observational study, or a clinical trial. Caregivers are welcome to complete it from their own perspective or on behalf of their loved one. You’ll be asked about your clinic visit experience, genetic testing (if applicable), accessibility, and the quality of services received.

I know there are a lot of surveys out there, and it’s easy to feel “survey fatigue.” But we believe this survey can directly shape how care is delivered to our community. By taking part, you’re helping every HD family move one step closer to better, more consistent care.

Once we’ve collected enough responses, HD-PACE will share a community-informed snapshot of HD clinic experiences across the country. Our hope is to create a resource that helps families find the right fit for their care; whether that’s recognizing the amazing work from HD clinics or identifying where gaps may exist.

Together, we can help strengthen connections, increase transparency, and make sure every person impacted by HD has access to the care and support they deserve.