Tackling rare diseases at European level

PubMed, the Internet portal of biomedical and life sciences literature, indexed an interesting article, entitled “Tackling rare diseases at European level.” (Folia Med (Plovdiv). 2007;49(1-2):59-67). Authors are Taruscio D, Trama A and Stefanov R, from the National Centre Rare Diseases, Istituto Superiore di Sanità, Roma. Since 1999 the European Commission has gradually developed a proactive approach towards rare diseases (RD). Despite the progress made over the last years, a comprehensive and evidence based approach is still missing in many EU Member States (MS), leading to an incomplete and often inadequate framework to address rare diseases. Healthcare systems in EU MS differ to great extent among countries in respect to their organization and funding. In general, they are not ready to face the specific problems and needs of people with rare diseases for possible prevention, timely diagnosis, adequate treatment and rehabilitation. It is therefore important to develop a strategic plan. So far only France has developed a national strategic plan for rare diseases, Bulgaria is in the process of approving its national plan for RD and Spain is in the process of developing it. The three MS initiatives presented in this paper confirmed the availability of great experiences and expertises among many EU MS and supported the idea that all these different experiences available at the EU level should form the basis for developing recommendations on how to develop strategic plans for RD. To access the full abstract of the article, click here.