Have you ever watched a medical drama where doctors, nurses, and family members are trying to diagnose unique symptoms in their patients? There are musical montages of reading medical textbooks, trying new treatments, and seeking advice from others until–magically–someone finds the answer in the form of a rare disease.
While TV thrives off of these episodic stories, they often neglect to paint the whole picture. There are real patients, real families, real researchers, and real medical providers who can tell their stories better than a scriptwriter, and now they have the opportunity to have their voices heard on The Rare Share podcast.
Presented by The Noah Project and UAB’s Department of Clinical and Diagnostic Sciences (UAB CDS), The Rare Share was announced at the Rare Disease Symposium held on February 28, 2025, to commemorate Rare Disease Day.
Hosted by UAB Nuclear Medicine and Molecular Imaging program director Amy Brady, each episode amplifies the voices of individuals navigating these conditions, as well as the caregivers, researchers, educators, and advocates supporting them.
“I hope that listeners gain a different perspective and more of an understanding of what it’s like living with a rare disease,” Brady said.
By sharing experiences and expertise, The Rare Share aims to shed light on the challenges, inspire hope, and build a bridge of understanding for listeners everywhere.
Brady said the idea for the podcast came during a conference hosted by the ASXL Rare Research Endowment Foundation (ARRE). When asked about the purpose of the project Brady stated, “The world needs to know what it’s like for a person who is living with a rare disease on a day-to-day basis, they need to know what it’s like to be a caregiver and the struggles they face every day, they need to know what it’s like on the researcher side too. How do they develop these treatment plans, where do you even start?”
The podcast also emphasizes the importance of the role that researchers play and how this project gives them a connection to patients beyond their offices “When they can see the connection with all of their work and they can see that person they’re going to help–they really feel like they’re touching lives.”
The Calder family on a recent vacation.The first episode will debut on Tuesday, March 18, and will be released monthly for its inaugural season. The premiere will feature Caitlin Miller Calder, whose daughter Della was the first person to be diagnosed with Bainbridge-Ropers Syndrome, a rare genetic mutation in the ASXL3 gene. Calder began a Facebook page that now has over 1,800 members and serves as a way for families to find support, seek advice, and make vital life-long friendships and connections.
Listeners are encouraged to follow the School of Health Professions on Instagram and Facebook to learn how they can tune in.
Do you or someone you know live with a rare genetic disease? Are you a researcher or medical provider hoping to shed more light on your role? Email Amy Brady at amybrady@uab.edu with your idea and why you should be the next guest on The Rare Share.
