Rare on Air host Julien Poulain talks to Dominique Sturz, patient advocate and leader of the Usher Initiative Austria, and Simone Boselli, Public Affairs Director at EURORDIS, to discuss the difficulties that many currently experience when accessing rare disease medicines, and what the EU is doing to address these difficulties. Dominique shares with us her family’s experiences with a lack of approved medicines for her daughter’s Usher Syndrome, and Simone explains the European Commission’s recent proposals to expand the development of, and access to, rare disease medicines.
Email the podcast at RareOnAir@eurordis.org.
