#30 Rare Disease Advocacy with Wes Michael

In honor of Rare Disease Month, we're thrilled to welcome a special guest to our podcast episode: Wes Michael, President, and Founder of Rare Patient Voice. With over two decades of experience in rare and orphan diseases, Wes has dedicated his career to amplifying the voices of patients and caregivers in medical research and development. Join us as we delve into the story behind Rare Patient Voice, its mission, and the invaluable role it plays in shaping the future of healthcare.

 

Before we dive into our conversation with Wes, let's take a moment to acknowledge Rare Disease Month. Did you know that Rare Disease Day falls on the last day of February? It was chosen because February, with its rarest day, the 29th, represents the perfect opportunity to raise awareness and celebrate the strength and resilience of individuals affected by rare diseases.

 

Now, let's turn our attention to our esteemed guest, Wes Michael. With his wealth of experience in market research and healthcare, Wes founded Rare Patient Voice in 1998 with a vision to empower patients and caregivers to make their voices heard in the medical research and development process.

 

Insights into Rare Patient Voice:

- Wes shares the inspiring story behind the creation of Rare Patient Voice and what inspired him to establish this organization.

- We learn how Rare Patient Voice connects patients and caregivers with opportunities to voice their opinions on medical products and services, ensuring their voices are heard and valued.

 

Empowering Patient Voices:

- Wes discusses how Rare Patient Voice ensures diversity and inclusivity in the patient populations it represents in research studies and surveys.

- Insights into the role of patient advocacy groups in amplifying patient voices and collaborating with Rare Patient Voice to drive impactful change.

 

Shaping the Future of Healthcare:

- Wes shares his perspectives on the future of rare disease research, patient engagement, and the invaluable role patient insights play in shaping healthcare advancements.

 

Inspiring Action:

- As we wrap up our conversation, Wes leaves our listeners with a powerful message about the importance of elevating the voices of individuals affected by rare diseases and the profound impact they have on shaping the future of healthcare.

 

Rare Disease Month serves as a poignant reminder of the strength, resilience, and unwavering spirit of individuals in the rare disease community. We extend our heartfelt thanks to Wes Michael for sharing his insights and dedication to empowering patient voices through Rare Patient Voice. Together, let's continue to raise awareness, drive change, and advocate for a brighter future for all those affected by rare diseases.

 

Be sure to check out Rare Patient Voices on their website. 

 

Stay tuned for the next new episode of “It Happened To Me”! In the meantime, you can listen to our previous episodes on Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “It Happened To Me”. 

 

“It Happened To Me” is created and hosted by Cathy Gildenhorn and Beth Glassman. DNA Today’s Kira Dineen is our executive producer and marketing lead. Amanda Andreoli is our associate producer. Ashlyn Enokian is our graphic designer.

 

See what else we are up to on Twitter, Instagram, Facebook, YouTube and our website, ItHappenedToMePod.com. Questions/inquiries can be sent to ItHappenedToMePod@gmail.com.