In a statement on World Rare Disease Day, the Commissioner Stella Kyriakidou.

Her statement in detail:

“Today, almost 36 million people across the EU experience what it’s like to live with a rare disease every day. Most of these diseases are incurable, which causes fear and despair. At national level, resources and knowledge to treat these diseases are often scarce, which makes the added value of EU action unquestionable.

In a strong European Health Union, no one should be left behind, no matter where they live or what they suffer from. We therefore need strong cooperation at EU level to ensure early diagnosis and affordable treatment and care for all.

For more than 20 years, work in this area has been a priority for the EU. By putting patients at the center, we have become pioneers in the fight against rare diseases.

The 24 European reference networks, which today bring together rare disease doctors and specialist healthcare providers across the EU, are a tangible example of successful European cooperation. They ensure the transfer of information so that patients do not have to travel, and include over 1,600 specialist centers in 382 hospitals across the EU and Norway.

In the coming years, the EU will invest over €77 million to consolidate and improve these networks. To better integrate them into national health care 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 our ties in the health sector. In addition, we provide financial support under the “Horizon Europe” program, which foresees the allocation of 100 million euros for the development of diagnostic tools and treatments in the framework of a new European partnership for rare diseases.

Looking ahead, under the pillars of the European Health Union, EU pharmaceutical law reform aims to direct pharmaceutical companies’ investments in rare disease medicines and focus on underserved areas through targeted incentives and regulatory support. The reform will also help innovation reach patients across the EU. With the European Health Data Space, digital health data will become more readily available for research, innovation and policy-making, also benefiting patients with rare diseases.

Pooling resources and joint actions at EU level is particularly important for rare diseases. We must continue to work collectively to improve the lives of citizens, on World Rare Disease Day and every day. Together we are stronger.”

Korina Georgiou