Being Rare Podcast

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

18/05/2025

I am honored to receive the Morgan's Heart of Gold 2025 Excellence in Caregiving Award!

The Excellence in Caregiving Award recognizes individuals who go above and beyond the call of duty in providing care for individuals with disabilities. Each year, individuals from around the world are celebrated for their dedication to the disability community.

To my friend and colleague, Luisa Leal, thank you for nominating me! I sincerely appreciate you sharing our journey and the impact of our work!

Learn more about Morgan’s Hearts of Gold awards: https://morgans.org/hearts-of-gold-awards


https://youtu.be/SVAvMzLgZBg?si=XKBdNriPKDtcDoIl

The Excellence in Caregiving Award recognizes individuals who go above and beyond the call of duty in providing care for individuals with special needs — whe...

05/05/2025

Just show up.

A few weeks ago, I had lunch with a friend who’s navigating a medically complex child and situation. They didn’t need advice. They just needed presence.

In this rare space, we’ve learned - as best we can - how to navigate "systems," but sometimes we need an alliance. The difference between someone breaking or breathing could be you! Presence is powerful. Be there!

24/04/2025

New Episode Alert! Tune in NOW to the Being Rare Podcast as we discuss the groundbreaking health equity report with Jenifer Waldrop, Executive Director of the Rare Disease Diversity Coalition™ (RDDC™). This report was conducted in partnership with the National Organization for Rare Disorders, Inc. (NORD).

Watch the live recording on YouTube https://youtu.be/M_grFJvCLfw, or listen in wherever you stream your podcasts!

www.theewefoundation.org/podcast

In this episode, Sarita is joined by Jenifer Waldrop, Executive Director of the Rare Disease Diversity Coalition (RDDC), to discuss the Inequities in the Rar...

24/04/2025

Tune in to the Being Rare Podcast today at 2:00pm CST. We're sitting down with Jenifer Waldrop, Executive Director of the Rare Disease Diversity Coalition, RDDC to discuss the Inequities in the Rare Disease Community Report. Watch the premier on YouTube or tune in wherever you stream your podcasts!

www.theewefoundation.org/podcast