European Reference Networks (ERNs) recently launched to allow specialists to work together for the diagnosis and treatment of rare and complex diseases.
The networks are now set to begin work.
"Today, on European Rare Disease Day, I am particularly pleased to launch the European Reference Networks,” Vytenis Andriukaitis, European commissioner for health and food safety, said in a press release. “As a medical doctor, I have too often been witness to tragic stories from patients with rare or complex diseases who were left in the dark, sometimes unable to find an accurate diagnosis and receive a treatment."
The ERNs are established under the EU Directive on Patients' Rights in Healthcare (2011/24/EU). Those in the ERNs will be fighting to treat diseases that can cause chronic health problems, many of which are deadly. There are currently between 6,000 and 8,000 rare diseases that affect the daily lives of around 30 million people in the European Union, including many children.
“I have also seen my colleagues struggling to help because they lack information and opportunities to network,” Andriukaitis said in the release. “These networks will connect the considerable EU knowledge and expertise that is currently scattered between countries, making this initiative a tangible illustration of the added value of EU-collaboration. I am very confident that ERNs can light the way for rare disease patients, leading them to potentially life-saving and life-changing breakthroughs"
