Statement by Commissioner Kyriakides on the World Rare Disease Day – Stronger together
As part of International Rare Disease Day, the Commissioner issued a statement on the future of rare diseases in Europe, and in particular European reference networks.
“For up to 36 million people across the EU today, living with a rare disease is a daily reality. Most of them have no cure, and this causes fear and frustration. At national level, resources and expertise to treat these diseases are often scarce, making the added value of EU action undisputable.
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Our 24 European Reference Networks (ERNs) that today unite rare disease doctors and specialised healthcare providers across the EU are a true success story of European cooperation. They ensure that information travels so that patients do not have to, and involve over 1,600 specialised centres in 382 hospitals all over the EU and Norway.
In the coming years, the EU will be investing more than €77 million to consolidate and improve these networks. To better integrate them in the national healthcare systems, we are funding a new Joint Action with over €18 million over the next three years. In addition to all EU Member States and Norway, this action will also include Ukraine as part of our commitment to deepen ties in the area of health. In addition, we are providing financial support under the Horizon Europe programme, which includes €100 million for developing diagnostics and treatments under a new European Partnership on Rare Diseases.”