Brussels, 02/03/2011 (Agence Europe) - On Monday 28 February, EURODIS organised Rare Disease Day. This event was a means of informing European political leaders that very significant inequalities are still being experienced by patients suffering from rare diseases, as well as their families. Inequalities exist between member states where a disease may or may not be diagnosed. These disparities also very often occur between regions in the same country, due to the level of medical expertise and equipment available in the different areas.
As pointed out by EURORDIS' Chief Executive Officer Yann Le Cam, the organisation represents European-wide patient associations, which focus on rare diseases. A quarter of patients have to wait between five and thirty years after the appearance of their first symptoms until their disease is diagnosed. At least 40% of patients suffer from several misdiagnoses, which involve medical treatment and surgery that is superfluous, inappropriate and indeed, sometimes, harmful. 25% of patients are obliged to travel to another region to obtain a diagnosis and 2% have to travel to another foreign country. Access to social services still remains difficult in 30% of cases and it is too often the case that families have to care for those suffering from rare diseases, with a parent obliged to look after a sick child, for example. A rare disease is considered as such if it affects one in 2,000 people. It is estimated that there are between 6,000 and 8,000 rare diseases. These affect around 30 million people in Europe. (O.J./transl.fl)