300 million patients affected by rare diseases worldwide, 30 million in the EU and 4.5 million in Germany have one sad thing in common: hardly anyone listens to them. Most of the patients are children and young people. Three out of ten children with a rare disease do not live to see their fifth birthday. They are often misdiagnosed or not diagnosed at all, and care is not adapted to the needs of the patients. This often means that doctors are unable to make a diagnosis after years of marathon treatment – a problem that politicians must also address.
In order to bring the concerns of people with rare diseases to the German Bundestag, the initiator of the “Rare Diseases Bavaria” campaign and rapporteur of the CDU/CSU parliamentary group for care and pediatric and adolescent medicine, Erich Irlstorfer, MP, invites all interested parties to a political expert discussion:
Thursday, October 10 2024
4.30 to 6.00 pm, Deutscher Bundestag
After an expert impulse by Prof. Dr. Annette Grüters-Kieslich, Chairwoman of the Eva Luise and Horst Köhler Foundation for People with Rare Diseases, a moderated panel discussion, including Geske Wehr, Chairwoman of the Board of the Alliance of Chronic Rare Diseases, will shed light on the topic. Afterwards, questions from the audience are possible and welcome.
Registrations are possible until October 7, 2024, stating the full name and date of birth at
Further information will be sent out after registration. The invitation can be forwarded to all interested persons.
Contact: Jan Detering, Head of Office, MdB Irlstorfer: 030 227 71258
