Amplifying Patient Voices: Wes Michael on Rare Disease Advocacy

P4A Let's Talk Rare: The Life Science Podcast

In this episode of P4A Let's Talk Rare, hosts Georgie and Owen Bryant from Partners For Access are joined by Wes Michael, founder and president of Rare Patient Voice LLC. Wes shares the organization’s journey from its beginnings as a community project for hemophilia patients to a global platform that connects rare disease patients and caregivers with healthcare professionals. Rare Patient Voice has awarded over $30 million to participants and completed more than 210,000 projects, with Wes highlighting the company’s organic growth through patient referrals and advocacy partnerships.

Wes discusses the challenges of reaching patients nationwide, the rewarding impact of patient involvement in healthcare, and the essential role of patient-centricity in shaping drug development and health technology assessments. He emphasizes that patients' voices, as the end-users, are critical for creating effective healthcare solutions. Looking ahead, Wes shares his enthusiasm for expanding Rare Patient Voice into clinical trials and increasing its presence in Europe.

The episode concludes with a call to action for patients and caregivers to join the Rare Patient Voice community and share personal stories to further understanding and awareness of rare diseases.

Wes Michael Bio:

A market research industry veteran of over 40 years, Wes earned his MBA from the University of Chicago Booth School of Business and a BA in English from the University of Pennsylvania. In 2013, Wes launched Rare Patient Voice, based on a novel approach to building a market research panel that enables patients and caregivers to share their voices with researchers and companies developing products to improve patients’ lives. He structured the company on the core values of being a good patient resource, a good client partner, a good employer to staff, and a good citizen in our community. Since then, Wes has seen the company grow, expanding from the US to Canada, the United Kingdom, Spain, Italy, France, and Germany, completing thousands of projects, and providing customized service to hundreds of clients. He hopes that RPV’s work can help the lives of patients and caregivers who have participated in our studies and those who come after.

Episode Resources:

• Wes Michael on LinkedIn

• Rare Patient Voice LLC Website

• Owen Bryant on LinkedIn

• Georgina Rack on LinkedIn

• Partners4Access Website

• P4A Let’s Talk Rare podcast on Apple Podcasts