18 January 2018. State Secretary Lutz Stroppe and EU Health Commissioner Vytenis Andriukaitis met today for a technical discussion with the four German coordinators of the European Reference Networks for Rare Diseases. Together with representatives of the Charité and the German Hospital Society, they talked about how medical expertise on rare diseases can be shared across borders in the European Union (EU) and how the care of affected patients can be further improved.
The EU has launched a series of measures designed to pool forces and resources to diagnose and treat such diseases. The aim is in particular to network specialist centers and healthcare providers in the EU Member States that have experience and knowledge in the field of rare diseases. The European Reference Networks started their work on March 1st, 2017.
A lot has been achieved in Germany in recent years through the development of the National Action Plan for People with Rare Diseases. That helps the se-atlas for people with rare diseasesto find the right contact person online. The German ERN participants can also be found here.