"Rare diseases are also an emergency!"

Ruth Ladenstein from ERN Paedcan, Maurizio Scarpa from MetabERN , Luca Sangiorgi from ERN BOND European Reference Network, Hélène Dollfus from ERN-EYE, Veronique Trillet-Lenoir, Member of the European Parliament, Alexis Arzimanoglou from EpiCARE and Alain Verloes from ERN ITHACA.

(27.10.2021)"Rare diseases are also an emergency!" - That was the message from the European Reference Networks (ERNs) for rare diseases to members of the European Parliament at a joint meeting in Strasbourg.

Currently, the EU spends a lot of money on combating the pandemics, which is undoubtedly a major priority. “However, rare and undiagnosed diseases are also emergencies and need appropriate attention,” emphasizes Prof. Ruth Ladenstein, coordinator of the ERN for Pediatric Cancers (ERN PaedCan). It is assumed that around 30 million people in the EU suffer from a rare disease. Often, these diseases cannot be diagnosed and treated appropriately, which is due to a lack of appropriate resources for adequate care and research.

"The European Reference Networks’ mission is to care for rare diseases that often lack timely diagnoses and appropriate treatment options" explains Ruth Ladenstein. "High expectations are put on ERNs and we can only meet them properly, if the budgets are significantly increased."

The physician-scientist adds, "We had a fantastic meeting at the Parliament where we could talk face-to-face to parliamentarians from different countries, inform them and discuss future vision and funding options. We very much hope that the EU will see the urgent need for action and place the necessary investments together with the member states. Let us take care of the rare.”

Currently, 24 ERNs across Europe involve approximately 1,000 highly specialized units from 370 hospitals in 26 states (25 EU states and Norway). More information >> https://ec.europa.eu/health/ern_en

Learn more about the ERN for pediatric cancer: https://paedcan.ern-net.eu/