“Part of our culture at Wave is focused on making sure we incorporate the community perspective in everything we do. Whether it is reviewing clinical trial materials or figuring out how best to explain our science to a community audience. The HD-CAB has helped to streamline this process by bringing together experts who represent all aspects of living with HD. They are engaged and motivated to help lend their voice to furthering research and partnering with sponsors in the space. At EHDN this past year, we participated in the Industry Roundtable and the Medical Director of our WVE-003 program said it was an incredible way to end the conference by hearing directly from those impacted by HD. It continues to drive us to work faster knowing many are counting on us. Thank you to Astri, Jenna and Tina for inviting us to participate and to each of the CAB members for sharing their perspective and journey!” – Chelley Casey, VP Patient Advocacy at Wave
“Feedback from the patient and caregiver community is important to capture throughout drug development. It’s not just about listening to their input but implementing their feedback to improve the patients’ clinical trial experience. What I appreciated about the HD-CAB team was how supportive they were throughout the process, which helps smaller biotech companies such as ours. We gained valuable insights from our meeting with the HD-CAB that will significantly shape our work in Huntington’s disease.” – Seth Rotberg, Senior Manager of Patient Advocacy and Engagement at Prilenia Therapeutics
“I have been involved in the planning of many advisory board meetings. It’s an important endeavor but it’s always a lot of work. Through their proactive approach, HD-CAB made it much easier. The ad board members had already been recruited and trained. They took the lead on the organizational and administrative aspects of the ad board. They even took the lead facilitation. We worked well as a team to ensure our goals were accomplished. The participants were very well prepared and gave us an invaluable look into their lives and diverse experiences. They helped us understand how important it is to work together and inspired us to keep moving forward. We at uniQure came away with invaluable insights and got the chance to share more of our work with the community we’re working for.” – Daniel Leonard, Senior Director of Global Patient Advocacy at uniQure
“It was a pleasure to meet such an amazing group of people. The CAB team has pushed the PTC team into overdrive! The real and honest sharing of the reality of HD has generated a lot of questions and dare I say shifted the thought process for our team.” – Sian O’Neill, Patient Engagement Director at PTC Therepeutics
“Thank you so much for the wonderful discussion today. We learned so much and there are already ideas for new ways to engage and ensure HD family needs are met, especially as they relate to the trials “. – Melissa Honohan, Director and Patient Engagement at Novartis
“I would like to thank the HD-CAB advocates as well as the HSG and HD-CAB management teams for an unforgettable joint HSG & HD-CAB HD advisory board. I am confident that the first ever joint HSG + HD-CAB international patient advisory board will forever stand out as one of the most impactful, inspiring, and engaging advisory boards of my career. It was truly amazing to see how quickly the entire room got comfortable and cozy with each other and so too how rapidly and effortlessly deep and profound insights started flowing through the discussion. It was everything I had hoped for and so much more! This is certainly just the beginning of our journey together as I can’t wait for round 2!” – Peter Collins, VP, Global Program Team Lead – Neuro Franchise in Annexon Biosciences