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Being Rare Podcast
Sarita Edwards
111 episodes
6 days ago
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'll talk about health equity, access to care, innovation, policy, community, and collaboration. Follow us on social media @beingrarepodcast. Got questions about the show? Email us - podcast@theewefoundation.org!
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Non-Profit
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All content for Being Rare Podcast is the property of Sarita Edwards and is served directly from their servers with no modification, redirects, or rehosting. The podcast is not affiliated with or endorsed by Podjoint in any way.
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'll talk about health equity, access to care, innovation, policy, community, and collaboration. Follow us on social media @beingrarepodcast. Got questions about the show? Email us - podcast@theewefoundation.org!
Show more...
Non-Profit
Business
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Ep 99. Funding Challenges for Small Nonprofits, Research, Scholarships, Inclusion, and More!
Being Rare Podcast
12 minutes 28 seconds
1 year ago
Ep 99. Funding Challenges for Small Nonprofits, Research, Scholarships, Inclusion, and More!

In this episode of the Being Rare Podcast, Sarita kicks off the conversation celebrating the E.WE Foundation's 5th year anniversary and why she and her husband Kareem decided to establish the foundation, which leads into the challenges of micro-small nonprofit funding. Sarita shares the Trisomy 18 Newborn Screening Participation Research Survey hosted by the E.WE Foundation and led by student interns Harlie Williams and Michael Yun. The survey is for families with living or unalive children who have been diagnosed with Trisomy 18. The goal of the survey is to capture how families understand newborn screening and assess their personal experiences with newborn screening processes. Complete the survey by visiting the E.WE Foundation website at theewefoundation.org/newbornscreening or by accessing the following link: https://docs.google.com/forms/d/e/1FAIpQLSfZYlbRcsnOXA6sMFwF8M3OlDSEPWE2RyvnS4_EY0Uh_eqC9w/viewform RAREis_ Scholarship powered by our friends at the EveryLife Foundation for Rare Diseases and Rareis_. The scholarship is for adults 17+ years living with a rare disease. Applications are open until April 22, 2024. Learn more and apply at rarescholarship.org. 2024 MC Friend Bowl is an opportunity for exceptional students like Elijah to enjoy inclusive-styled games like football, baseball, basketball, and more! Students with disabilities are paired with students without disabilities to maneuver through sport stations and games. Elijah was paired with a high schooler who made sure he enjoyed the activities. Make sure to follow us on social media @beingrarepodcast. Find Sarita, Being Rare Podcast host on all social media platforms! Find our live recordings on YouTube, make sure to subscribe and turn on your notifications so you’ll know we upload new episodes. Find Being Rare Podcast wherever you stream and listen to your podcasts. Until the next episode, Be Rare!

Being Rare Podcast
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'll talk about health equity, access to care, innovation, policy, community, and collaboration. Follow us on social media @beingrarepodcast. Got questions about the show? Email us - podcast@theewefoundation.org!