Being Rare Podcast

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

21/04/2025

Not all phone calls bring bad news. As a rare parent, I’ve come to brace myself every time the phone rings—school, doctors, insurance... the list goes on. But then came this call.

Elijah was selected for Make-A-Wish, and the joy in that moment was indescribable.

Some calls bring stress. Some bring joy. Either way, let's breathe, hold on, and keep going. Because one moment of unexpected joy can carry us through a thousand moments of expected stress.

10/04/2025

Tune in the next episode of the Being Rare Podcast! We're joined by Jenifer Waldrop, Executive Director of the Rare Disease Diversity Coalition, RDDC to discuss the Inequities in the Rare Disease Community Report. The episode airs Thursday, April 24, 2:00pm CST.

Watch the video recording on YouTube or listen in wherever you stream your podcasts!

www.theewefoundation.org/podcast

07/04/2025

“But You Don’t Look Sick” - Today’s One Minute Monday is about invisible illness—the kind of struggle that doesn’t always show up on the outside. If you’ve ever been told “But you don’t look sick,” this one’s for you.

- Just because we can't see it, doesn’t mean it’s not there.
- Your story is valid, even if others don’t understand it.
- Let’s build a world where listening comes before judgment.

Tune in for a 60-second reminder that compassion matters—every day.

04/04/2025

April is National Minority Health Month!
Did you know that racial and ethnic minorities face significant health disparities, including in rare disease care? This month, we’re raising awareness to highlight these inequities and emphasize the need for increased access to resources, education, and support for underserved communities.

Tune in to the next episode of the Being Rare Podcast, where we’ll discuss the Inequities in the Rare Disease Community Report with Jenifer Waldrop, Executive Director at the Rare Disease Diversity Coalition (RDDC).

The episode will air Thursday, April 24th, 2:00pm CST on YouTube and wherever you stream your podcasts!

18/03/2025

We are excited to announce that the findings from our Trisomy 18 Newborn Screening Research Project are now being shared through presentations and scientific poster!

Our study, "Parental Awareness and the Impact of High Mortality Diagnoses on Newborn Screening Education", highlights crucial insights into gaps in newborn screening education for rare conditions like Trisomy 18. The results are a vital step in advancing awareness, improving resources, and empowering families navigating complex diagnoses.

The full findings will be available for public review on our website soon.

Special acknowledgment to our research interns - Harlie Williams and Michael Yun for their dedication to this important work.

www.theewefoundation.org

18/03/2025

Today, on Trisomy 18 Awareness Day, we are excited to introduce our Care Planning Guide for Families Expecting a Baby with Trisomy 18!

Receiving a Trisomy 18 diagnosis can feel overwhelming, but you are not alone. This guide is designed to bridge the gap between diagnosis delivery and care coordination, offering support, information, and resources to help families navigate this journey with confidence and hope.

Download the free guide now and share it with families who may need this support! Learn more at www.theewefoundation.org/resources