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.

Guest Interest Form

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.

Please complete the form to help us learn more about your background and expertise. Submissions are reviewed and evaluated for alignment with our upcoming themes.

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Contact Information

First and Last Name:

Email:

Phone:

Location (City, State, Country):

Professional Background

Your Connection to the Rare or Broader Health Community (e.g., Advocate, Researcher, Clinician, Policy Leader, Nonprofit Executive, etc.):

Organization / Affiliation:

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About You

Brief Bio (2–3 sentences): Tell us who you are and what drives your work in health or advocacy.

What areas of expertise or focus would you like to discuss on the podcast? (e.g., policy reform, access to care, patient-centered research, innovation, caregiver support, etc.)

Why do you want to be a guest on the Being Rare Podcast? What makes this conversation important right now?

Experience & Engagement

Have you been a guest on other podcasts or panels? If yes, please share links or details:(required)

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Social Media Handles: (Facebook, X/Twitter, Instagram, etc.)

Have you listened to a Being Rare episode?(required)

Yes, at least 1 episode. Yes, at least 1 episode and I'm subscribed! No, I haven't listened.

Is there anything else we should know about your work or message?