At a conference held on Tuesday 10 and Wednesday 11 October in Bilbao, Spain, the European Economic and Social Committee (EESC) urged the EU to launch a European action plan to strengthen cooperation between national health systems to combat rare diseases.
The EESC believes that this European strategy should aim to provide people with rare diseases with the care they need in the EU Member State where the best treatment is available.
Rare diseases are generally chronic, sometimes disabling and sometimes fatal. More than 7,000 rare diseases are listed, affecting 8% of the EU population, or around 36 million people. Around 80% of these diseases are genetic in origin. For about 95% of these diseases, there is no specific treatment or cure. Amyotrophic lateral sclerosis (ALS), sickle cell disease and haemophilia are just a few examples.
The 24 European Reference Networks (ERNs) created in 2017 are an important milestone in European cooperation between the various healthcare systems. In 2022, the EESC published an opinion in which it called for solutions to be put in place at EU level to alleviate the daily impact of rare diseases in both personal and professional life. (Original version in French by Lionel Changeur)