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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: Khim's story
Rare on Air
5 minutes 54 seconds
9 months ago
Rare Disease Day: Khim's story

In this episode of our bonus series marking Rare Disease Day, we share the inspiring story of Khim Bahadur. When Khim's son, Animesh, was diagnosed with Osteogenesis Imperfecta (OI), he encountered a daunting lack of resources and awareness in Nepal. Undeterred, Khim sought global support, securing life-changing treatment abroad for Animesh and becoming a trailblazer for OI advocacy in Nepal. Through education, media campaigns, and community building, Khim continues to drive rare disease awareness and inspire others across the nation.

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.