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

Mostrando página 3 de 3

Rare Disease Day: Becky's story 11/01/2024
Rare Disease Day: Amber's story 05/01/2024
Gene therapies: Promoting development and expanding access 28/12/2023
Action within reach: Shaping the future at ECRD 2024 30/11/2023
ERNs on Air: Giving back to the community 08/11/2023
Gene therapies: Why are they important? 27/10/2023
Should more diseases be screened for at birth? 28/09/2023
ERNs on Air: No two are alike 07/09/2023
Assessing the true value of new health technologies 31/08/2023
Finding New Uses for Existing Medicines 27/07/2023
Transforming Healthcare through Sharing Data 29/06/2023
The effort to make rare disease medicines less rare 26/05/2023
Mental wellbeing with a rare disease 27/04/2023
ERNs on Air: The role of patient advocates 18/04/2023
War with a rare disease: Responding to the invasion of Ukraine 28/02/2023
Breaking down barriers: Living with a rare disease and disability 31/01/2023
Screening at birth: The key to longer, healthier and better lives 21/12/2022
The Journey of European Reference Networks 29/11/2022
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