Being Rare Podcast

12/09/2025

When facing a rare disease, it’s not just about enduring—it’s about fighting forward with determination and resilience. In this episode, we talk about what it means to meet a diagnosis head-on and keep moving forward, no matter what!

Tune in the full episode here: https://youtu.be/G05CoWcHWOA?si=nUF2Syp5WCbYPrEq

10/09/2025

"It took forever for my local doctor to believe I had a problem.” This is a reality we hear far too often in the rare disease community. Delayed diagnoses leave patients and families feeling unheard, overlooked, and at a disadvantage. In this episode, we talk about why listening matters — and why recognizing rare diseases sooner can change lives.

Tune in to the full episode here: https://youtu.be/G05CoWcHWOA?si=MX3dTIf4jjv2Orgp

08/09/2025

So many people living with rare diseases need their people. Sometimes it’s not about big answers, but the little things — where to stay, where to eat, where to park at a hospital you’ve never been to before. Having a network makes all the difference. In this episode, we talk about the power of community and connection. Tune in to the full episode here: https://youtu.be/G05CoWcHWOA?si=q5uTrVsQlakR-AL0

05/09/2025

In this episode of the Being Rare Podcast, Sarita is joined by Swapna Kakani and Jasmine Hightower - and briefly by Brooke Thomas - to talk about newborn screening and state level advocacy. Check out the full episode here:

In this episode Sarita is joined by Swapna Kakani, Jasmine Hightower, and briefly by Brooke Thomas to talk about newborn screening, state advocacy, and the i...

28/08/2025

New episode alert! In the latest episode of the Being Rare Podcast, Royce Robertson opens up about navigating rare disease care and how cycling raises awareness, funds, and promotes health equity for patients fighting sarcoidosis.

Tune in today on YouTube https://youtu.be/G05CoWcHWOA and wherever you stream your podcasts!

https://open.spotify.com/show/3Qzp9jP8cwXCAOFs3o3MUX

26/08/2025

New podcast episode this Thursday, August 28th at 2:00pm CST. Tune in on YouTube or wherever you stream your podcast!

19/08/2025

I started the Being Rare Podcast to share OUR story—alongside the stories of others living with rare diseases and the organizations that support us. Born from a place of lived experience and advocacy, our mission has always been about giving voice to those whose stories often go unheard.

From monthly episodes to our bite-sized “1-Minute Monday” series—we hope to offer insight, inspiration, and solidarity. Yes, things get quiet sometimes, and the episodes may come at a slower pace... but make no mistake: We are still here and we're still recording!

Check out a recent episode on YouTube or wherever you stream your podcasts! Thank you for listening, sharing, and walking this journey with us.❤️ https://theewefoundation.org/podcast

New episode coming soon!

16/08/2025

The E.WE Foundation is a global healthcare advocacy organization supporting families affected by Trisomy 18 and other rare diseases. Check out our website to learn more https://theewefoundation.org

14/08/2025

Throwback Thursday! As we wrap up , we wanted to highlight this Advocacy and the Legislative Landscape session from our 2022 LEAP into Advocacy Virtual Summit. The session was moderated by Shivani Vyas, and included presentations and conversations by Ella Balassa, Laura Romano, and Jennifer Harris.

Tune in to explore how we, as advocates, patients, and caregivers, use social health and digital concepts to inform and influence policy and critical health decisions.

The LEAP into Advocacy Virtual Summit explores how we, as advocates, patients, and caregivers, use social health and digital concepts to inform and influence...

26/06/2025

There's still time to register! Our LEAP into Advocacy Virtual Summit is happening tomorrow, Thursday, June 26, 10 am CST. Hear from experts on advocacy, maternal and child health, and mental health. Learn more about each session and register: theewefoundation.org/leapsummit

19/06/2025

We're one week away from the LEAP into Advocacy Virtual Summit! Join us on Thursday, June 26, 10AM CST to hear from experts on:

- Leveraging Data to Drive Impact: Using Stories to Shape Policy
- Advocacy 101: Navigating the Legislative Process for Rare Disease Policy
- Centering Mothers: The Overlooked Impact of Maternal Health
- Breaking the Silence: The Impacts of Mental Health on Patients and Their Families

Learn more & register: theewefoundation.org/leapsummit

This event is approved for 2 CEUs.

13/06/2025

Registration is NOW OPEN!
Join us for the 2025 LEAP into Advocacy Virtual Summit
🗓️ Thursday, June 26, 2025
🕙 10:00 AM CST
💻 Free | Virtual | CEUs Available

This year’s theme — Innovation & Collaboration: Leveraging Data to Transform Rare Disease Advocacy — brings together experts, professionals, and changemakers for a powerful day of learning and action.

Save your spot by registering today: https://us06web.zoom.us/webinar/register/WN_sweY1-VNTL6uB7wmbIlYBw

Learn more theewefoundation.org/leapsummit