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Health Commissioner Stella Kyriakides on networking for progress in Rare Diseases

The EU Commissioner for Health and Food Safety Stella Kyriakides highlights the importance of European and national networking for progress in Rare Diseases. Below, a transcript of her speech on occasion of the Cyprus celebrations of Rare Disease Day 2020, organized by the Cyprus Alliance for Rare Disorders at the European University of Cyprus.   

Ladies and gentlemen, 

For many people a rare disease means a lack of answers. It means waiting too long for a diagnosis. Often, it means there is no clear treatment plan. Sometimes, the uncertainty that comes with a rare disease can double the pain and fear experienced by a patient. And remember, this is a community with 30 million members across Europe.

Today on Rare Diseases Day, we honor that community and call for renewed energy and closer cooperation in this field. Events like this one are a crucial part of that process. I'm sorry that I cannot be with you in person. But I assure you this issue is very close to my heart. I know that together we can help to improve research, diagnosis, treatment, quality of life and integration into society for people with rare diseases.

The EU has strived to support this community of patients and health professionals for several years. This support takes many forms: (i) promoting the development of national rare disease plans and strategies, (ii) supporting the definition, codification and inventory of Rare Diseases, (iii) building and broadening the knowledge base and (iv) empowering patient organizations.  Created in 2017, the European Reference Networks are another concrete example of this support. This innovative cross-border system connects experts from all over Europe like neurons in a giant brain and allows them to operate as one and this system is providing answers, expertise and hope to patients and their families. Twenty-four (24) different ERNs have been created since 2017 gathering over 900 clinical units across Europe and around 250 affiliated partners, and the Commission is working with Member States to integrate the ERNs into our National Health Systems and to ensure that these networks are accessible to patients. Cyprus engages in the ERNs through two different hospitals: Archbishop Makarios the III Hospital on hematological diseases and the Cyprus Institute of Neurology and Genetics on congenital malformations and rare intellectual disability. So Cypriot patients and health professionals are contributing to and benefiting from the added value of the ERNs. These networks are a perfect illustration of pan-European cooperation.

And I want to take this opportunity to highlight the importance of European and National networking in this area. The Cypriot RARE-e-CONNECT platform is an excellent example of networking in practice. Patients and health professionals can connect and share knowledge and expertise with their peers both in Cyprus and at the European level, at the same time recognizing and understanding that rare diseases are vital if we are to make progress.

With extensive EU support, Orphanet has developed a rare disease codification system working with Member States to promote their National implementation and the Commission also supports the EU platform on rare diseases. This platform will connect multiple Regional and National Registries setting standards for data sharing, improving interoperability and making data more available and accessible; and I was really delighted to see that the EU public health program recently funded a project to set up a web-based database for congenital anomalies in Cyprus. I hope that this will facilitate a national surveillance system and advance collaboration with the EU platform.

Ladies and gentlemen, national and European networking can help overcome challenges caused by limited expertise and geographical barriers. The added value of pooling resources and sharing knowledge on 6,000 different rare diseases is clear. And this is particularly important for small member states like Cyprus where some 60,000 people are affected by Rare diseases. So in ending, I wish you a productive discussion, I urge you to continue coordinating and engaging and I look forward to joining you in your efforts.           

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