#RareDiseases - The EU needs a strategy to help 36 million people in Europe

At its conference in Bilbao on 10-11 October 2023, the EESC issued a strong plea urging the European Union to launch a European action plan to fight rare diseases.

The main goal is to step up cooperation between national health systems to provide better diagnoses, treatment and care to patients with rare diseases.

Rare diseases pose a serious problem across all EU Member States;  the nascent European Health Union could play a key role in tackling them.

In practice, rare diseases are actually less rare than we might think. The figures are alarming: currently, there are over 7 000 rare diseases affecting 8% of the EU's population, approximately 36 million people.

Organised by the Section for Transport, Energy, Infrastructure and the Information Society (TEN), the conference brought together 50 speakers, 45 EESC members, the European Commission's Director General for Health and Food Safety, 3 Members of the European Parliament and around 550 participants from all over Europe.

"The European Health Union we are building must protect and care for every citizen. We have a duty to support people living with rare diseases and their families. Our efforts will continue to make a difference to all those in need," said Stella Kyriakides, European Commissioner for Health and Food Safety.

"The fact is that "rare diseases" are not rare at all. It is a pan-European challenge that requires a pan-European solution," echoed Oliver Röpke, EESC president, while Baiba Miltoviča, TEN section president, added: "We need a European action plan to allow patients with rare diseases to be treated in the most suitable EU Member State: they deserve the best care, no matter where it is available in Europe." (mp)