HD PACE

Did you know that those who identify as female are more likely to take patient-focused surveys? Nearly 70% of our current participants identify as female. Did you know that youth are also less likely to get involved in survey-based research? We would love to see better representation of all genders and ages in our data, because we want to hear about all HD clinical experiences! Please fill out or share our HD clinical care survey using the link below:

https://docs.google.com/forms/d/e/1FAIpQLSeXBCbVFqPxmHgG5aM6YYAZUp-9ipc9GkoDDs1X74K-aXaM9Q/viewform

Check out the podcast below to hear Lauren and Sarina discuss the Clinic Patient Experience Survey! Please help us reach our goal of 💯 responses by filling out the survey and sharing it with others! 😊

Listen to the podcast here: https://www.spreaker.com/podcast/help-4-hd-live--6451567

Take the survey here: https://docs.google.com/forms/d/e/1FAIpQLSeXBCbVFqPxmHgG5aM6YYAZUp-9ipc9GkoDDs1X74K-aXaM9Q/viewform

Almost to 100!!! Find out how to help these reach this goal as members of HD-PACE provide an update on the Clinic Patient Experience Survey! Listen TOMORROW at 1pm PST on !

Tune in: https://www.spreaker.com/podcast/help-4-hd-live--6451567

Listen later on your streaming service: Spotify, iTunes, iHeartRadio, etc...

Do you receive care for Huntington’s Disease? Have you shared your experiences with us yet? We’re looking for your input! We want to identify where patients receive care for Huntington’s disease, understand what are the largest barriers to care, and where the best care is in the US. If you haven’t filled out the survey, please do so at hdpace.org

Have you taken the survey?

Are you interested in participating in open science? The results of our Huntington’s disease patient care survey will be fully de-identified (your information won’t be shared) and then shared publicly on our website so policy makers, regulatory bodies, clinical sites, care teams, caregivers, and patients can see where clinical care for HD is thriving and what makes a great care clinic. Share your results with us at hdpace.org and be a part of for HD!

HD-PACE was at the 41st Annual Huntington’s Disease Society of America’s National Convention in Pheonix, AZ! It was a weekend filled with education, connection, and trips to the pool. We are excited to see you next year in Philly!

HD community advocates recently met with the FDA to explain why Huntington’s disease should be considered a national priority under the CNPV Pilot Program. Now, the FDA is asking for public comments, and our community has an opportunity to speak up. We need the FDA to understand that the HD community does not have time to waste.

Please take a few minutes to submit a comment. Ask the FDA to prioritize fatal, progressive neurodegenerative diseases like Huntington’s when promising therapies are ready for review.

Our voices matter, and the FDA needs to hear the urgency directly from those impacted by this disease. Please consider adding yours.

Comment here:
https://www.regulations.gov/.../FDA-2026-N-2366-0001/comment

Comments close June 29 at 11:59 PM ET!

Regulations.gov

We are so grateful that we had 70 HD community members who participated in our HD Clinic Rating Survey in 2025! 🎉

Our goal for 2026 is 100 participants. More responses mean stronger data and a better understanding of how we can advocate for improved Huntington’s disease care.

If you’ve visited an HD clinic for any reason in the past two years, please share your experience by completing our survey at hdpace.org.

Anonymized preliminary results from our first 70 participants are now available on our website.

Help us reach 100! 💯📋

THIS WEEKEND! Come online to hear more about HD Pace (HD Patients Accelerating Clinical Endeavors) with Christy & Lauren at Virtual HIPE! Tune in at 8am PST on Saturday!

https://www.help4hd.org/events-1/virtual-hipe-the-future-planning-understanding-and-looking-at-whats-next

Why take the survey?

YOUR VOICE MATTERS! By sharing your experience at an HD clinic, you’re helping to build a public, community-driven resource that highlights what truly works in HD care—and what needs to improve.

This ANONYMOUS (responses are de-identified) 15-minute survey gives patients and families the opportunity to inform future care, guide clinical trial planning, and empower others in the HD community to make more informed decisions about where to go for support.

Please take the survey and share it with others in the HD community.

SSeth Rotberg@ DearienBBrianna EskerSSarina Smith

🔗 Take the survey here: https://forms.gle/QYpYjQ8pus4c1msy7

📣 Calling all HD community members!

We want to hear about your experience at HD clinics, including what worked, what didn’t, and what could be improved.

We have created a short, ANONYMOUS 15-minute survey for patients and caregivers to share feedback.

Your feedback can help improve HD care—for you, your family, and the thousands of others navigating this disease.

📊 Once we have enough responses, results will be shared publicly at www.hdpace.org. (**Your responses are de-identified and made anonymous**)

Your voice matters! Please take the survey and share it with others in the HD community.



🔗 Take the survey here:

Huntington's Disease Clinic Rating Survey Thank you so much for participating in the Huntington’s Disease (HD) Clinic Rating Survey! Survey data will be used to capture community feedback to improve the patient experience at HD clinics. Our goal is to help community members and other key stakeholders to identify top HD clinics based on in...