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Forgotten Patients

27.02.2010: ‘European day of rare diseases\”in Essen for the pharmaceutical industry often uninteresting, not handled correctly by many doctors: patients with rare diseases have mostly a long ordeal behind him. Already the European day of rare diseases, launched by the EU in the life for the third time therefore makes\”attention to their fate. One of Germany’s largest event on the day of action will take place on Saturday, February 27, 2010, in Essen. Inform passers-by and interested parties over 20 self-help groups are Limbecker Platz from 10 to 18 h in Germany’s largest urban shopping center\”in Essen. In addition a number of medical specialists and specialists will be there the questions.

\”The place is ideally chosen: we want the issue of rare diseases\” bear in the middle of the society and reach out to the people. The bad thing is that it can affect anyone of us at any time after all\”, says Kirsten Wosniack, one of the organizers of the action tag, and Chairman of the Thyroid Federal Association the butterflies ‘. \” It is important that we give those affected with this action the opportunity to gain a voice and to draw attention to their situation\”, explains Ulrich Schmitz, patron of this event and Center Manager. Currently over 4 million people with a rare chronic disease live sometimes just a handful of interested parties throughout Europe in Germany, in Europe, the number is estimated at almost 20 million. One speaks of a rare disease, if less than 40,000 people have been affected; in Europe, there are over 6000 rare diseases. Sometimes there are only a handful of people or individuals in Europe, who have to live with one of these rare diseases. The tragic: Medicines are often scarce in these cases or missing entirely, because the pharmaceutical industry explored mostly diseases where foreseeable due to the number of cases also corresponding sales are expected.