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Rare on Air
EURORDIS
54 episodes
1 week ago
A EURORDIS-Rare Diseases Europe podcast on the experiences, challenges and successes of people living with rare diseases. Julien Poulain, Communications Manager at EURORDIS, meets with people who share their unique experiences of living with a rare disease, those who advocate for them, and experts on rare disease policy. Email the EURORDIS Rare on Air team at: rareonair@eurordis.org.
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Health & Fitness
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All content for Rare on Air is the property of EURORDIS 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.
A EURORDIS-Rare Diseases Europe podcast on the experiences, challenges and successes of people living with rare diseases. Julien Poulain, Communications Manager at EURORDIS, meets with people who share their unique experiences of living with a rare disease, those who advocate for them, and experts on rare disease policy. Email the EURORDIS Rare on Air team at: rareonair@eurordis.org.
Show more...
Health & Fitness
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Rare Disease Day: David's story
Rare on Air
3 minutes 42 seconds
11 months ago
Rare Disease Day: David's story

This episode of our bonus podcast series marking Rare Disease Day features the story of David, who is living with Stiff Person Syndrome. It explores David’s experience of having no definitive diagnosis – the feelings of uncertainty, frustration and depression this comes with as well as the physical effects of a rare disease.

However, David’s story inspires a message of perseverance and hope that he likens to climbing a mountain. Listen in to hear about how this disability changed David’s life and attitude.

Visit ⁠⁠rarediseaseday.org⁠⁠ to share your story or get involved. Rare Disease Day is on 28 February 2025.

Rare on Air
A EURORDIS-Rare Diseases Europe podcast on the experiences, challenges and successes of people living with rare diseases. Julien Poulain, Communications Manager at EURORDIS, meets with people who share their unique experiences of living with a rare disease, those who advocate for them, and experts on rare disease policy. Email the EURORDIS Rare on Air team at: rareonair@eurordis.org.