A successful RD-action annual meeting: considerable progress made inspiring future work
Launched in June 2015, RD-Action, the joint action of the Member States of the European Union for rare diseases, brings together 64 partners in 40 countries with the aim of developing and sustaining the Orphanet base and implementing priorities particularly in order to improve the codification of rare diseases. In particular, the aim of this action is to foster dialogue between the Member States and Europe and to bring the production of data into synergy with the needs for the implementation of European policy priorities.
RD-Action partners met on 26 and 27 October in Paris to review the achievements of the first year of the action and discuss the year ahead. Achievements around four themes were addressed: Increase visibility of rare diseases; Implementing policies for rare diseases and promoting dialogue at national and European level; Interconnect policies for rare diseases in member states; Optimize collaborations and resources.
The R & D Coordinator, Ana Rath (Director of Orphanet, INSERM), opened the day by reviewing achievements and activities aimed at improving the visibility of rare diseases and adapting Orphanet to the new Scientific and political landscape. Evolutions of Orphanet data and procedures have therefore been presented. The importance of the implementation of the ORPHA codes in the European Member States was emphasized (in particular by Rémy Choquet of the BNDMR and by Stefanie Weber of the DIMDI): this is an essential element in the identification of patients, Improving knowledge, particularly epidemiology, and interoperability between health and research, in particular within the framework of the European Reference Networks. The second session of this day highlighted the important steps taken in the implementation of policies for rare diseases in the EU Member States and in maintaining a dialogue both at national and European level. National conferences for rare diseases to be organized with the support of EURORDIS by the national alliances of the different European countries will be the main vehicle for this dialogue. The report on the state of the art of rare diseases is also part of this dialogue, as are the working groups set up to promote the equity of health systems in the field of rare diseases. The action of RD-Action to support the development phase of future European reference networks has played a facilitating role in this construction and will continue once these networks have been labelled. Finally, it was pointed out that the international OrphaNews newsletter, vector for the dissemination of RD-Action, now counts more than 16,700 subscribers. The dissemination and dialogue role of the European Conference on Rare Diseases and Orphan Products (ECRD 2016) was an important achievement of the first year of work. Finally, possible synergies with other areas and initiatives were outlined, in particular, the common objectives of RD-Action and the Joint Action for Rare Cancers (JARC) for the improvement of epidemiological surveillance and research. Scientific collaborations are also underway, for example with RD-Connect and HIPBI-RD.
The commitment of RD-Action partners to the achievement of their objectives was demonstrated, as was the enthusiasm and energy of the partners to continue the work. The advent of the European Reference Networks will give additional impetus to actions which will provide an interesting opportunity for development.