32. Meet an Expert: The Rare Disorder Podcast X Patients Rising ft. Terry Wilcox, CEO

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The Rare Disorder Podcast

Shivani Vyas

43 episodes

1 day ago

The Rare Disorder Podcast is a podcast created by Shivani Vyas, a high school senior, young changemaker, and rare disease advocate, dedicated to spreading awareness for rare diseases. This podcast is divided into 2 main series. In the "Meet a Fighter," Shivani interviews patients and those affected by rare diseases allowing them to share their inspirational stories. In "Meet An Expert/Partner," Shivani interviews public health experts, rare disease organization leaders, rare advocacy leaders, and more! Check out my other initiatives and platforms: https://linktr.ee/theraredisorderpodcast

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32. Meet an Expert: The Rare Disorder Podcast X Patients Rising ft. Terry Wilcox, CEO

The Rare Disorder Podcast

25 minutes 35 seconds

4 years ago

32. Meet an Expert: The Rare Disorder Podcast X Patients Rising ft. Terry Wilcox, CEO

In this episode, I chat with Terry Wilcox, the Founder and Executive Director of Patients Rising and Patients Rising Now.

Formed in 2015 as a 501(c)3, Patients Rising has developed a significant following of over 110,000 patients and caregivers and has guided more than 25,000 of them on their journeys to advocate for themselves and their loved ones to get the care and treatments they need to live a fulfilling life. Patients Rising Now is a national nonprofit organization dedicated to advocating for the rights of patients with chronic and life-threatening illnesses. We work at community, state and federal levels to activate patients in support of reforms and legislation aimed at advancing patient access to and affordability of healthcare.

A passionate advocate for patients with cancer and other serious diseases, Terry Wilcox is Executive Director of Patients Rising, a non-profit patient education and advocacy organization that helps patients get access to essential diagnostics and the treatments they need.

Inspired by Selma Schimmel, considered by many as the “original” young adult survivor advocate, Terry left a career in Los Angeles in the entertainment industry to join Vital Options International (VOI), a cancer communication, education and advocacy organization Selma launched in 1983 to facilitate a global dialogue on cancer. From 2008 to Selma’s death in May 2014, Terry worked alongside her mentor as creative director of VOI and the supervising producer of a video program called The Group Room that featured discussions with the world’s leading oncologists and cancer researchers.

After Selma’s death, Terry continued to advance Selma’s legacy as VOI’s ExecutiveDirector until August 2015, when she moved to Washington, DC and co-founded Patients Rising with her husband. Now Terry and her team engage the patient community, along with physicians, health policy experts and allied healthcare professions, to develop realistic, solution-oriented discussions so those with life-threatening and chronic diseases will have a voice in shaping policies that will improve access to quality care.

Learn more about Patients Rising and Patients Rising Now and how to get involved!

Websites: https://www.patientsrising.org/ & https://patientsrisingnow.org/

Instagram: https://www.instagram.com/patientsrising/ & https://www.instagram.com/patientsrisenow/