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More Than a Statistic: Rare Disease Day…Please Clap
Rare Disease Day is kind of our Super Bowl. Purple, blue, green, and pink lights, awareness posts, big feelings…and a whole lot of people learning what “rare” actually means. In this episode, we chat about life as rare women - being medical mysteries, navigating diagnostic odysseys, and finding community in the uncommon. Individually rare doesn’t mean alone, and this episode explores what that really looks like beyond the hashtags. We break down the myths around rarity, the emotional toll of constantly explaining your body, and what happens when awareness doesn’t always turn into support. With humor, honesty, and lived experience, we dig into the realities of care, access, and systems that weren’t designed with the rare disease community in mind. Most importantly, we talk about what actually helps: patient-led research, real funding, flexible workplaces, disability benefits, caregivers, and showing up for rare communities long after Rare Disease Day ends. Because being rare isn’t just a statistic - it’s an identity, a community, and a source of power. No clapping required. Just keep showing up.
Links Mentioned:
- Share your rare disease story, join local or virtual events, and help raise awareness for the rare disease community: https://www.rarediseaseday.org
- National Organization for Rare Disorders (NORD): https://rarediseases.org
- EveryLife Foundation for Rare Diseases: https://everylifefoundation.org
- Rare Disease Legislative Advocates (RDLA): https://everylifefoundation.org/rare-advocates/
Connect with Kelly Berger
Instagram | Facebook | LinkedIn
Connect with Avery Roberts
Instagram | Facebook | LinkedIn
Intro/Outro Music Created by Andy Rusch
Image Description: Avery and Kelly engage in a virtual conversation. Kelly, on the left, is a woman with light skin, brown hair, a nose ring, and white earbuds. She is wearing a black top and is positioned in front of a wall, out of focus, with some decor. Avery, on the right, is another woman with light skin, brown hair, and white earbuds. She is wearing a red sweater and is positioned in front of a blurred background that hints at a window.
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By Wheel Talk with Kelly and Avery PodcastRare Disease Day is kind of our Super Bowl. Purple, blue, green, and pink lights, awareness posts, big feelings…and a whole lot of people learning what “rare” actually means. In this episode, we chat about life as rare women - being medical mysteries, navigating diagnostic odysseys, and finding community in the uncommon. Individually rare doesn’t mean alone, and this episode explores what that really looks like beyond the hashtags. We break down the myths around rarity, the emotional toll of constantly explaining your body, and what happens when awareness doesn’t always turn into support. With humor, honesty, and lived experience, we dig into the realities of care, access, and systems that weren’t designed with the rare disease community in mind. Most importantly, we talk about what actually helps: patient-led research, real funding, flexible workplaces, disability benefits, caregivers, and showing up for rare communities long after Rare Disease Day ends. Because being rare isn’t just a statistic - it’s an identity, a community, and a source of power. No clapping required. Just keep showing up.
Links Mentioned:
- Share your rare disease story, join local or virtual events, and help raise awareness for the rare disease community: https://www.rarediseaseday.org
- National Organization for Rare Disorders (NORD): https://rarediseases.org
- EveryLife Foundation for Rare Diseases: https://everylifefoundation.org
- Rare Disease Legislative Advocates (RDLA): https://everylifefoundation.org/rare-advocates/
Connect with Kelly Berger
Instagram | Facebook | LinkedIn
Connect with Avery Roberts
Instagram | Facebook | LinkedIn
Intro/Outro Music Created by Andy Rusch
Image Description: Avery and Kelly engage in a virtual conversation. Kelly, on the left, is a woman with light skin, brown hair, a nose ring, and white earbuds. She is wearing a black top and is positioned in front of a wall, out of focus, with some decor. Avery, on the right, is another woman with light skin, brown hair, and white earbuds. She is wearing a red sweater and is positioned in front of a blurred background that hints at a window.