Sun. May 29th, 2022

Brussels, 25 February 2022

Today, more than 6,000 rare diseases are affecting up to 36 million people in the EU. For those living with rare diseases – many of them children – the quality of life is strongly affected, as they often cause chronic pain and suffering, and some can be life-threatening.

Ahead of World Rare Disease Day on 28 February, Commissioner for Health and Food Safety, Stella Kyriakides, made the following statement:

“On this World Rare Disease Day, I am calling for stronger EU cooperation to make sure that all patients across the EU living with a rare disease have access to the highest standards of diagnosis, treatment and care they need. It is an unfortunate reality that today, we still do not have answers for 95% of rare diseases – this must change.

A strong European Health Union is a Union that protects and cares for every citizen, no matter what their disease is or where they live. It is therefore clear that we need to bring EU solutions to this EU-wide issue. This is why, together with the French Presidency, we are working towards a stronger EU response on rare diseases.

Our action on rare diseases aims to improve the diagnosis, care and treatment of patients through the pooling of resources. Facilitated through our 24 European Reference Networks, this EU-wide cooperation project helps specialised knowledge and expertise travel across the Union. To help overcome barriers and limitations at national level, on 1 January this year, we saw 620 new members joining our Networks, increasing both the geographical scope and the diseases covered to now more than 1,400 specialised centres across all Member States. This will enable more patients to get much needed expertise closer to them, and will help health professionals to expand their knowledge and find solutions. This is a clear example of how EU collaboration delivers both for patients and for healthcare professionals.

Research and innovation is crucial to understand diseases and develop game-changing treatments. This is why we will reform the legislation on medicines for rare diseases to foster innovation and ensure faster developments and more timely and equal access to medicines for rare diseases. Also, establishing EU-wide registries is a key element of the Networks’ activities. To harness the potential of health data and to create further innovative opportunities for patients to access it, these registries will be integrated into the European Health Data Space that we will present in the coming weeks. Later this year, we will also launch a Joint Action to expand the work on integrating the Networks into national healthcare systems. This is something that many patients, carers and healthcare professionals have asked for.

We have allocated over €2.4 billion to support multinational research projects related to rare diseases under our research funding programmes. Moving forward, we will provide additional funding of €26 million to improve the operation of our Networks. With funding support from the EU4Health programme, we will also set up a new Virtual Academy to train rare disease experts and enhance the Clinical Patient Management System.

To deliver even more for patients, we are evaluating the Cross-border Healthcare Directive, including on how to improve cooperation on rare diseases and European Reference Networks.

Many promising actions and initiatives are in the making, with solidarity and collaboration at their heart.  It is through these guiding principles that we will be able to support those tens of millions of Europeans who have to live with a rare disease. We will continue our work to make their lives easier every day, not only on World Rare Disease Day.”

For More Information

Factsheet – EU Action on Rare Diseases

European Reference Networks