Rare diseases: an invisible threat

Although the incidence of each rare disease is very low, millions of people are affected across the European Union because the number of such diseases is high. There are between 5,000 and 10,000 rare diseases, with a total number of sufferers ranging between 27 and 36 million people.

 

 

Parliament was being asked to comment on a draft Council recommendation that asks the Commission to propose practical measures in five years' time.  This is too late, according to the consultation report drafted by Antonios Trakatellis (EPP-ED, EL) and adopted by Parliament today by 383 votes to 116 with 15 abstentions. 

 

The report says that the current EU legislative framework is poorly suited to rare diseases and not well defined. Although rare diseases contribute greatly to morbidity and mortality, they are mostly invisible in health care information systems due to the lack of appropriate coding and classification systems.

 

MEPs want the Commission to present implementing measures by 2012, rather than after five years.  These should cover inter alia: a) the budgetary measures necessary for the Community Programme on Rare Diseases to be effective; b) the creation of relevant networks of centres of expertise; c) the collection of epidemiological data on rare diseases; d) the mobility of experts and professionals; e) the mobility of patients; and f) consideration of the need for other actions.

 

Parliament adopted an amendment today which recommends that Member States encourage efforts to avoid rare diseases which are hereditary, through genetic counselling of carrier parents and, where appropriate and not contrary to existing national laws and always on a voluntary basis, through pre-implantation selection of healthy embryos.