Being Rare
by Sarita Edwards
April 25, 2025 5:00 am
Hosted by Sarita Edwards, Being Rare highlights the unique perspectives of individuals living with rare diseases. Through intimate—and sometimes difficult—conversations, we explore the challenges and triumphs of navigating everyday life with a rare diagnosis. Popular for our one-minute episodes, this talk radio-style platform addresses critical issues such as health equity, access to care, and mental health. We’re not just patient stories, we’re the patient experience! Follow us on social media @beingrarepodcast. Got questions about the show? Email us – podcast@theewefoundation.org!
Recent Episodes
Ep 107. Health Equity Insights: Discussing the Inequities in the Rare Disease Community Report
3 months agoEp 106. Being Rare and Black: A Rare Disease Day Exclusive
5 months agoEp 105. Prioritizing Self Care Part 2: Finding What Works For You
6 months agoEp 104. Prioritizing Self Care Part 1: My Body Forced Me to Change
6 months agoEp 103. Transitioning Truths: Navigating A Medically Complex Diagnosis From Childhood to Adulthood
6 months agoEp 102. Hello 2025: What's In, What's Out - Being Rare Edition
6 months agoEp 101. What's happening in May? Myositis Moonwalk, Mother's Day, Mental Health, One Minute Mondays
1 year agoEp 100. Protecting Our Futures: Black Maternal Health and Child Abuse Neglect & Prevention
1 year agoEp 99. Funding Challenges for Small Nonprofits, Research, Scholarships, Inclusion, and More!
1 year agoEp 98. What Are You Telling Families Who Get A Trisomy 18 Diagnosis?
1 year ago