VASCERN News
23 July 2024
Revision of Rare Vascular Tumors in the Orphanet Database
This year, February 28th marked not only Rare Disease Day but also the official one year anniversary of the 24 European Reference Networks (ERNs), which were approved to receive the ERN label by the ERN Board of Member States on December, 2016 and were officially launched on March 1st, 2017!
Vytenis Andriukaitis, European Commissioner for Health and Food Safety, released a statement to celebrate this anniversary and to report on the successes of this innovative project so far.
He focuses on the patients (more than 50 to date) that are now benefitting from cross-border expertise thanks to the dedicated IT platform developed by the European Commission (Clinical Patient Management System) and how this platform is fulfilling the goal of allowing medical knowledge that travel, rather than the patients.
He concludes by stating:
“In the coming year I would expect the ERNs to help hundreds if not thousands of patients, and in the longer term, I hope to see the ERN model extended to other diseases. As we reach a critical mass of patients being analysed, diagnosed and treated, ERNs, will boost research through large clinical studies and contribute to the sustainability of national healthcare systems. I am confident that ERNs will help and improve quality of life for many patients in the EU suffering from rare and/or complex diseases and conditions – children and adults alike.”
Read the full statement here