5-я встреча Экспертов Евросоюза по Редким Заболеваниям осветила действия в области Редких Заболеваний в ключевых областях.
5-я встреча Европейской комиссии экспертов по редким заболеваниям (ЕUCERD) состоялась в Люксембурге 20-21 Июня 2012, обсуждение включало множество важных вопросов.
The Clinical Added Value of Orphan Medicinal Products - Information Flow (CAVOMP-IF) took centre stage with unanimous agreement to adopt the EUCERD recommendations by written procedure following minor modifications that arose from discussion during the meeting. This latest EUCERD Recommendation is the result of several years of effort and input from key stakeholders from the EUCERD, the European Medicines Agency, the European Commission and the EUnetHTA. The CAVOMP Information Flow is a process for the exchange of knowledge between Member States and European Authorities to help improve informed decisions based on the clinical added value of orphan medicinal products. The EUCERD recommendation highlights the fact that the life cycle of an orphan medicinal product is a continuum of evidence generation, necessary to assessors and decision makers, as well as being necessary to improve the good use of medicines. Other important issues were addressed, including the Cross-Border Healthcare directive and the European Reference Networks (ERNs). The EUCERD is developing recommendations for the ERNs, to be finalised later this year. Other key topics included the EUCERD Joint Action work plan, an update of the situation for rare diseases in international nomenclatures, the revision of the World Health Organization’s International Classification of Diseases, and the upcoming workshop of cross-referencing terminologies. There was also discussion on the potential for sharing knowledge on newborn screening practices, the evolution of the International Rare Disease Research Consortium (IRDiRC), and the European Commission’s Health for Growth Programme (2014-2020). A report from the EUCERD’s fifth meeting will be forthcoming.