"Enough is enough" – patient alliance's message as rare disease drugs fail to reach members

“A catastrophic failure,” a “failing business model” and patient anger at an “unethical situation.” Those are just a few of the sentiments expressed by the boss of EURORDIS, a non-governmental patient-driven alliance representing 710 rare disease patient organizations in 63 countries.

Yann Le Cam, EURORDIS’ chief executive, has called for more collaboration between all relevant national and European authorities and the pharmaceutical industry to streamline the medicine pricing process so that patients can access the medicines they need.

At the recent EURORDIS Membership Meeting, rare disease patient representatives expressed their frustration concerning the current situation around access to medicines.