The European member organizations of OIFE virtually came together on February 1st to learn about what’s happening in pharmacological research and how the patient organizations in Europe can work nationally and on a European level to improve access to new and potential treatments for OI. In addition to the delegates, leaders from the European OI-organizations were invited.

Even if a treatment is approved by the EU Commission, the road might be a long and winding one before new medicines end up in pharmacies or hospitals in the various European countries. Different countries have different processes, but they also deal with the same challenges for medicines for rare conditions (orphan drugs). It’s important that the national organizations have knowledge on the topic.

Introductions included talks from professor Oliver Semler, Public Affairs Director Simone Boselli from EURORDIS, colleagues from The International XLH Alliance and researchers from Mereo Biopharma.