Campaign Background
Rare diseases are among the least researched areas of medicine. In Germany alone, more than four million people are affected, many of them children and adolescents. For those affected, a diagnosis often means a years-long odyssey; many diseases are neither treatable nor curable. The ‘Rare Diseases Bavaria’ (SEB) campaign was launched to bring these ‘orphans of medicine’ out of the shadows and make their voices heard. It is aimed at patients, relatives, self-help groups and the general public to raise awareness of the challenges faced by people with rare diseases.
Activities and results
The campaign included more than 50 events – on site in the districts of Freising, Pfaffenhofen a.d. Ilm and Neuburg-Schrobenhausen, as well as online – with expert presentations, discussions and panel debates. More than 2,000 people were reached and numerous self-help groups had the opportunity to present their experiences and demands. The events covered a wide range of topics, including the difficulty of diagnosis, the frequent lack of treatment options, the importance of research and the enormous burden on patients and their families.
The White Paper summarises these findings and formulates concrete demands for better care. It emphasises the important contribution of self-help and makes recommendations on how to improve care and diagnosis through specialised networks, innovative diagnostic methods and increased research.
Getting started together
Speaking at the press conference, Erich Irlstorfer emphasised that the presentation of the White Paper was not an end point, but rather a new beginning. We are only at the beginning of a long journey to sustainably improve care for people with rare diseases,” said Irlstorfer. He would like to thank everyone who took part in the campaign – from self-help groups to health professionals and policy-makers.
The campaign and the White Paper have shown that there is a concrete need for action: faster diagnoses, specialised care structures and more intensive cooperation between research and care are essential to improve the lives of those affected. The Eva Luise and Horst Köhler Foundation is pleased to be the patron of the campaign and will continue to support it to the best of its ability.
Download the White Paper
The full white paper can be downloaded here:
