Rare on Air

Por: EURORDIS
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: [email protected].
58 episodios disponibles

Latest episodes of the podcast Rare on Air

Rare Disease Day: Christine's story 18/12/2025
Rare Disease Day: Annarita's story 04/12/2025
Rare Disease Day: Ahmed's story 20/11/2025
ERNs on Air: Practical tools for patient partnership in the ERNs 07/11/2025
Inês Alves on the power of lived experience in shaping rare disease policy 31/10/2025
ERNs on Air: Tackling medicine shortages for rare endocrine conditions 25/09/2025
Tomasz Grybek on patient involvement and making lived experience count in regulatory decisions 03/07/2025
Nick Sireau on patient-driven scientific breakthroughs and drug repurposing 01/04/2025
Rare Disease Day: Noah's story 26/02/2025
Rare Disease Day: Eden's story 19/02/2025
Rare Disease Day: Huy's story 12/02/2025
Rare Disease Day: Sushmita's story 06/02/2025
Rare Disease Day: Sophia's story 29/01/2025
Rare Disease Day: Khim's story 15/01/2025
Rare Disease Day: Fatimah's story 02/01/2025
Julián Isla on how AI can revolutionise rare disease healthcare 19/12/2024
Rare Disease Day: Emma and Nellie's story 18/12/2024
Rare Disease Day: David's story 06/12/2024
ERNs on Air: JARDIN - The Joint Action integrating ERNs into national health systems 05/12/2024
Kelly du Plessis on fighting for her son and rare disease advocacy in South Africa 28/11/2024
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