In this episode of Rare on Air, we mark Rare Disease Day 2024! Observed globally on 29 February, this day unites people, organisations, and communities worldwide to raise awareness for the 300 million individuals battling rare diseases. Host Julien Poulain leads a conversation with three pivotal figures in rare disease advocacy about how Rare Disease Day is striving to foster global solidarity and achieve equity in social opportunities, diagnostic access, therapies, and healthcare for people living with a rare disease. Simona Bellagambi of UNIAMO, the Italian rare disease alliance, shares the impressive ways in which Italy's rare disease community have been celebrating the campaign over the years. EURORDIS's own Chief Executive Officer, Yann Le Cam, recounts the inaugural journey of Rare Disease Day since 2008, revealing the impact the campaign has had within Europe over the years. Finally, Eda Selebatso, the Founder and Chair of BORDIS, the national rare disease alliance of Botswana, talks about the value of a robust international rare disease community and reaching equitable solutions for those affected, from Botswana to the rest of Africa and the world at large.
Contact the podcast by emailing RareOnAir@eurordis.org, and join the conversation on social media using the hashtag #EurordisRareOnAir.
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