BEING RARE PODCAST

Live | Bold | Unscripted

Where Conversations Drive Change

Hosted by rare disease advocate Sarita Edwards, Being Rare is a talk radio–style podcast that explores the issues shaping the rare disease and health equity landscape.

Each episode dives into real conversations at the intersection of policy, practice, and patient experience. Through bold, unscripted discussions with thought leaders, clinicians, advocates, and changemakers, we explore topics such as:

  • Health Equity & Access to Care – advancing fairness across systems of health and research.
  • Innovation & Policy – understanding how legislation, funding, and data drive change.
  • Community & Collaboration – building bridges between families, professionals, and organizations.

Known for its mix of short insights and deep-dive interviews, the podcast unpacks complex issues with honesty and intention — creating space for ideas that move the conversation forward.

🎧 Listen anywhere you stream your podcasts
📺 Watch episodes on YouTube

Featured Episode

EP 109. Navigating Life with Ataxia SCA15 – Being Rare Podcast

In this episode of the Being Rare Podcast, host Sarita Edwards sits down with Michael Mantz, a business owner, writer, and advocate living with Ataxia SCA15, a rare and progressive neurodegenerative disorder.From his forthcoming memoir to building a community that celebrates resilience, this conversation is all about showing up authentically, even when life feels unsteady. Through his blog and new brand Inspire Thread, Michael brings visibility to those navigating rare, invisible, or progressive conditions. Hear more from Michael and his journey in today's episode!

Join the Conversation: Stay connected for episode drops and community discussions: Facebook | Instagram | YouTube

Support the Show: Interested in sponsoring or supporting the Being Rare Podcast? Email us at podcast@theewefoundation.org

Be a Guest on the Podcast

We welcome healthcare professionals, advocates, policymakers, and community leaders to share their perspectives.

If you’d like to be considered for a future episode, please complete our guest interest form. Submissions are reviewed and selected based on alignment with upcoming topics.

Thank you for your interest in the Being Rare podcast.

We’ve received your submission and appreciate you taking the time to share your story, expertise, or interest in collaborating. Our team reviews podcast inquiries on a rolling basis and will follow up if there is a potential fit for an upcoming episode. Due to the volume of requests we receive, we may not be able to respond to every submission individually. Submission does not guarantee a podcast appearance. We’re grateful for your interest! For questions, please contact podcast@theewefoundation.org.

Thank you for your interest in joining the Being Rare Podcast!
We’re excited to connect with professionals, advocates, and changemakers shaping the rare disease and health equity landscape.

What is your connection to the rare or broader health community?(required)
Have you been a guest on other podcasts or panels?(required)
Have you listened to a Being Rare Podcast episode?(required)

By submitting this form, you agree to be contacted by The E.WE Foundation for communication related to the Being Rare Podcast.

Being Rare in Community

InspireThread creates advocacy-focused apparel that uplifts rare disease awareness and lived experience. When you shop using the link below, a portion of proceeds helps sustain our mission—at no additional cost to you.

Visit InspireThread today and use code beingrare10 at checkout for an exclusive listener discount.

InspireThread is an independent brand. This affiliate partnership helps support the Being Rare podcast.