Centering and Empowering the Patient Voice With Veronica Moore

Welcome to Living With… a UA-cam series presented by Hypersomnia Foundation. In this episode, Claire Wylds-Wright, CEO of Hypersomnia Foundation, sits down with Veronica Moore, MA, an experienced patient advocacy manager, health equity and inclusion advocate, public health educator, and Hypersomnia Foundation board member.
Veronica has more than 15 years of experience engaging with advocates, patients, caregivers, advocacy groups, and healthcare professionals on a range of topics spanning from clinical trial design, data collection and analysis, patient advocacy, patient engagement and recruitment, patient education, community engagement, and pharmacovigilance. More than half of her professional career has been dedicated to working with rare disease patient communities. She holds a Bachelor of Science in Public Health from East Carolina University and a Master of Arts in Sociology from North Carolina Central University.
Veronica currently is an Associate Director of advocacy manager at a global biotechnology company focused on supporting rare and rheumatic/autoimmune disease patient communities. In addition, Veronica currently serves on various advisory boards at Duke University and a host of other nonprofit organizations that are focused on diversity, equity, and inclusion (DEI); community engagement among underrepresented communities and rural settings. Veronica is a longstanding and significant contributor to the rare disease community, and she is committed to addressing health inequities in rare and communities that have been historically marginalized.
In this episode, Veronica and Claire discuss the shift in the healthcare community centering around the patient’s lived experience. The healthcare community now understands the value of patient stories and how they inform research, symptom treatment, and quality of life. Veronica believes advocacy is an “action-driven word” and storytelling is a vehicle for the action.
Veronica and Claire also share their thoughts about sleep equity within the sleep community. They believe that in the next few years, the intersection of sleep and other rare diseases will grow. There will be a public discussion about it.
We are extremely grateful for Veronica's generosity in sharing the importance of patient advocacy, especially in the rare disease space. Veronica’s work and advocacy changes people’s lives for the better.
Living With… is hosted by Claire Wylds-Wright with the Hypersomnia Foundation. It is produced by Elizabeth Joy Windom of Windhaven Productions.
A special thanks to our sponsors!
Platinum Sponsor - Jazz Pharmaceuticals
Gold Sponsors - Avadel Pharmaceuticals and Harmony Biosciences
Bronze Sponsors - Zevra Therapeutics and Takeda
Centessa Pharmaceuticals