DG SANTE honoured for services to the rare disease field!
Most of us are familiar with the European Ombudsman as a vehicle for raising concerns about perceived maladministration in EU institutions, and indeed this is a crucial role – in any civilised society, it is important that all citizens have a means to highlight perceived injustices and lodge complaints. However, last year the Ombudsman, Emily O'Reilly, decided that as part of her role to increase awareness and cooperation between the EU institutions and the citizens of Europe it would be illuminating to highlight instances of exemplary service and performance amongst the institutions of the EU, which the Ombudsman’s office often encounters but the public sometimes fail to see.
Thus the ‘Ombudsman’s Good Administration’ award was born. The award is designed to recognise excellence in many different areas: an individual, team or unit working for the EU could be nominated for demonstrating excellence in, for instance, innovation, customer service, transformation, or collaboration. The competition for this first award was intense – over 90 ‘projects’ were nominated, from the full array of EU institutions and agencies. On 30th March 2017, the Ombudsman announced that the first winner of this prestigious award was the European Commission’s DG SANTE, Unit C1, in view of the EU collaboration in sharing information and expertise in the field of Rare Diseases. Emily O’Reilly is quoted in the official press release as follows: “The overall winner exemplifies excellent co-operation at the EU and national level to help citizens, in this case around 30 million people affected by rare diseases in Europe. It is also a clear example of the benefits of the EU when it comes to tackling problems that may affect only a small number of people in individual member states but who benefit collectively from EU collaboration.”
This is a wonderful achievement for our friends and colleagues at DG SANTE, especially in C1 but from all Units, who support the cause of rare diseases so tirelessly. Those living and working with rare diseases for many years fully understand the importance of European level support for RD-related issues and collaborative activities: support which manifests in the form of, for example, Commission Communications, Council Recommendations, Expert Groups and their associated outputs, Joint Actions, and many other sorts of grants to support rare disease activities and NGO operations. Through the tireless work of many DG SANTE colleagues, (some of whom have since moved on to other areas, but nonetheless played a key role in this success) European countries have, overwhelmingly, now adopted national plans and strategies for rare diseases. Very recently, 24 European Reference Networks (ERNs) were approved, an unprecedented opportunity to embed the lessons and best practices gleamed through a decade of rare disease policy and expertise.
The DG SANTE Colleagues were nominated for this award by EURORDIS, which has enjoyed a long and fruitful collaboration with the EU. The value attached to patient perspectives and meaningful patient participation in all EU-supported enterprises is self-evident. The award was accepted at the dedicated ceremony by Gerhard Steffes and Enrique Terol from DG SANTE, alongside Valentina Bottarelli, Public Affairs Director at EURORDIS
The timing of this award is also very relevant. 2017 is the year in which the long-awaited ERNs begin their operations. The future priorities for the rare disease field are under debate, and support at the political level, nationally, also remains strong (as evidenced for instance by recent policy events in Malta dedicated to rare diseases, under the auspices of the Maltese presidency of the Council of the EU). It is encouraging to see the increasing collaboration between different DGs, and especially between DG SANTE and DG RESEARCH, for the benefit of the rare disease field. Jaroslaw Waligora (from DG SANTE) and Irene Nordstedt (from DG RESEARCH) gave a shared talk at the Maltese "Workshop on Integrating Research and Healthcare for Rare Diseases " showing their growing interactions in the field of rare diseases. Discussions are ongoing to create a European Joint Programme Co-Fund for rare diseases, to bridge the gap between care and research and enable a more effective and streamlined use of tools and resources, alongside support for new priorities, to strengthen the translational pipeline from bench to clinic and back again.
At this exciting juncture, therefore, it is very encouraging to see that the dedication of DG SANTE to the 30 million citizens living with a rare disease in Europe has received the praise and recognition it deserves. Congratulations!
The press release is available here - https://www.ombudsman.europa.eu/en/press/release.faces/en/77459/html.bookmark
See also the EURORDIS press release - http://download.eurordis.org.s3.amazonaws.com/PressRelease_DGSANTEWinsEUOmbudsmanAward.pdf