In this episode, we are joined by Wes Michael, the founder and president of Rare Patient Voice, who discusses the importance of including patient voices in healthcare decisions.

Rare Patient Voice connects patients with researchers and companies for interviews and studies, compensating them for their time and insights. Wes shares his background in market research and the experience that led him to create Rare Patient Voice.

The discussion highlights the shift towards patient-centricity, the unique experiences of patients with both rare and non-rare conditions, and the challenges faced by caregivers.

Wes also explains the various ways patients can participate, emphasising the importance of reaching diverse populations and ensuring inclusivity in research. Interested individuals are encouraged to visit the Rare Patient Voice website to learn more and get involved. You can also find them on Facebook and LinkedIn.

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Join our Online Peer Support Community and Discord server here: ⁠⁠⁠⁠⁠https://discord.com/invite/dUean4vDcX⁠⁠⁠⁠⁠

Watch The Chronic Pain Club Talk Show and these interviews LIVE on ⁠⁠⁠⁠⁠YouTube ⁠⁠⁠⁠⁠and join the conversation!

DISCLAIMER: Our content is for informational purposes only and does not substitute medical advice. The host of this podcast and its producers are in no way medically trained and do not claim to be. On this show, we share the lived experiences of others—their stories are their own, and we cannot be held responsible for their views or recommendations. Everyone is unique—what works for one person may not work for another. Always consult your medical professionals.

Music Credit: Buffon – by Gideon Murray

Friend of the show, Amy Wescott, a children's occupational therapist living with juvenile idiopathic arthritis, returns to the Chronic Pain Club after her first interview with us went on to receive thousands of views.

We discuss Amy's journey to becoming an occupational therapist [12:16], her experience living with arthritis [15:48], the challenges she faced [22:18], and how her personal experience has influenced her career [27:01]. Amy also talks about occupational therapy [34:36], her research [39:31], and the Children's Chronic Arthritis Association (CCAA) [48:15].

Follow the HOST:⁠⁠⁠⁠⁠https://linktr.ee/Joelvsarthritis⁠⁠⁠⁠

Join our Online Peer Support Community and Discord server here:⁠⁠⁠⁠https://discord.com/invite/dUean4vDcX⁠⁠⁠⁠

Watch The Chronic Pain Club Talk Show and these interviews LIVE on ⁠⁠⁠⁠YouTube ⁠⁠⁠⁠and join the conversation!

DISCLAIMER: Our content is for informational purposes only and does not substitute medical advice. The host of this podcast and its producers are in no way medically trained and do not claim to be. On this show, we share the lived experiences of others—their stories are their own, and we cannot be held responsible for their views or recommendations. Everyone is unique—what works for one person may not work for another. Always consult your medical professionals.

Music Credit: Buffon – by Gideon Murray

Angela Laborde, who lives with psoriatic arthritis, among other conditions, returns to the show to share with us why she volunteers and plays an active role in peer support communities online.

In Part 1 (https://open.spotify.com/episode/5KH7EINV5kCI4fK618ngX7?si=3afPdtoRQm-zAkqRkm0hag), we discussed Angela's journey to diagnosis with multiple chronic and autoimmune conditions, the challenges she overcame to get those diagnoses and the daily impact that has had on her.

In this bonus second episode, we discuss her volunteering work, how she helps others, why it's important, and how volunteering can help you cope with your health challenges.

Follow our GUEST:⁠https://www.instagram.com/a_schiro/⁠

Follow the HOST:⁠⁠⁠⁠https://linktr.ee/Joelvsarthritis⁠⁠⁠⁠

Join our Online Peer Support Community and Discord server here:⁠⁠⁠https://discord.com/invite/dUean4vDcX⁠⁠⁠

Watch The Chronic Pain Club Talk Show and these interviews LIVE on⁠⁠⁠YouTube ⁠⁠⁠and join the conversation!

DISCLAIMER: Our content is for informational purposes only and does not substitute medical advice. The host of this podcast and its producers are in no way medically trained and do not claim to be. On this show, we share the lived experiences of others—their stories are their own, and we cannot be held responsible for their views or recommendations. Everyone is unique—what works for one person may not work for another. Always consult your medical professionals.

Music Credit: Buffon – by Gideon Murray