Brussels, 11/11/2008 (Agence Europe) - On Tuesday 11 November, the European Commission adopted a communication and draft recommendation from the Council on rare diseases. This defines a comprehensive Community strategy for helping member states diagnose, treat and provide care to the 36 million EU citizens suffering from such diseases.
The communication (EUROPE 9755) describes a Community strategy based on three main action areas that aim to: improve recognition and visibility of rare diseases; support national strategies on rare diseases in member states and foster cooperation and coordination in the area of rare diseases at a European level. European cooperation will help to pool limited resources available for rare diseases, which are currently dispersed in the different countries of the EU. European action will facilitate contact between patients and professionals in different member states, as well as the exchange of knowledge, information and coordination in this domain. Its aims will be reached by, for example, creating a network of expertise centres in the different countries and using online health information technology. Most activities described in the communication are not new. It is above all about better coordinating action already begun in the Orphanet network, the ERA-Net research project co-funded by the research framework programme and activities developed by the European Medicines Agency (EMEA) on orphan diseases etc. The Commission will be assisted by an EU consultative committee on rare diseases (CCUEMR) (this committee will replace the current task force) and seek to involve member states. This is the sense of the recommendation it is proposing for their adoption (the subject constitutes one of the priorities of the French presidency for health and could be rapidly introduced, possibly during the mid-December Council). This recommendation calls for the adoption of national plans on rare diseases (identification, research, patient information, centres of excellence, contribution to European reference networks), the development of information exchange and good practices, as well as better cooperation, particularly in view of facilitating cross-border healthcare.
Rare diseases, of which there are 5 000 to 8 000, are those which affect fewer than five people out of ten thousand. They are essentially of genetic origin, but can also be rare forms of cancer, auto-immune diseases and congenital malformation.
Presenting the two texts to the press, European Health Commissioner Androulla Vassiliou said: “We want to bring patients suffering from rare diseases out of the dark. Expertise in this field is dispersed all over the Union. Even the existence of some of these illnesses is not fully recognised. As a result, very many patients remain plunged in uncertainty for years on end before their illness is correctly diagnosed or treated. This is an area where the added value of collaboration at European level is obvious and concrete, and can make all the difference between marginalisation and appropriate treatment for millions of people throughout Europe”. In a press release immediately after the presentation, British Conservative John Bowis welcomes the presentation of this strategy. Mr Bowis is the rapporteur of the European Parliament on the proposal for a directive concerning crossborder healthcare.
When asked by a colleague from the Frankfurter Allgemeine Zeitung about his reticence concerning the medicine package (patient information, fight against counterfeiting and pharmacovigilance) drawn up by the services under the Commission vice-president responsible for industry, Günter Verheugen, Ms Vassiliou simply said that adoption of the texts had been postponed and that the consultation process was still underway. “I do not wish to give my opinion until the end of the process”, she said. The package should have been adopted on Tuesday 21 October (see EUROPE 9763 and 9767). The date of 26 November is given for its adoption delayed for reasons connected to parallel trade interests. (O.J./transl.rh/jl)