Last week, our co-founder and Executive Director Katie Rizvi represented YCE at Politico’s Annual Health Summit, speaking as part of the spotlight discussion entitled “Rare diseases – under the microscope”.

Drug development for rare diseases is a complex issue, as drug companies often don’t see potential markets as big enough to return their research investments. Therefore, patients are often left either without a drug to help fight the disease or without access to one; the availability of developed orphan drugs varying wildly from market to market.

The current EU regulation was designed in 2000 to provide market incentives for drug companies to help alleviate the situation, but in 2020 it falls far short of it’s ultimate aim – to provide drugs and equal access to them for every rare disease patient in Member States, and a redesign is clearly needed.

Hear Katie discuss those issues, joined by the European Commission’s Olga Solomon (Head Of Unit, Medicines: Policy, Authorization and Monitoring, DG Sante) with Politico’s reporter Carlo Martuscelli.