Rare diseases Bavaria

"Rare disease patients are not alone!"

Opening event of the campaign "Rare Diseases Bavaria" under the patronage of Eva Luise Köhler

More than 150 guests from politics, medicine and self-help followed the invitation of the CSU member of the German Bundestag Erich Irlstorfer to the impressive barrel vault of the Freisinger Schafhof (Europäisches Künstlerhaus Oberbayern) on the evening of December 8. Under the motto "There are many rare diseases", the campaign "Rare Diseases Bavaria" was launched there under the patronage of Eva Luise Köhler.

In her keynote speech, Eva Luise Köhler outlined the many challenges faced by patients with rare diseases and urged: "Millions of chronically ill people, whose quality of life and life expectancy are often significantly limited, do not receive the medical care they need in this country, which has one of the best healthcare systems in the world. In order to meet the demand for the best possible care, three areas need to be addressed: research, the education and training of medical professionals, the development of specialized and networked care structures, and appropriate framework conditions. It is important that physicians and scientists, health insurers, public research funding, politicians and civil society work closely together: "In order to be able to use the findings of modern medicine in the best possible way for rare diseases, we need alliances. And we need events like today's, which brings together people from very different fields, with very different experiences, perspectives and ideas under a common theme." Eva Luise Köhler warmly thanked Erich Irlstorfer and his team for initiating and organizing this important initiative, for which she was very happy to assume patronage.

During a panel discussion that followed, the parliamentarian emphasized, "About 80 percent of diseases are genetic, and many are chronic and lead to at least one disability. This is a dangerous triad that changes biographies and must be counteracted." The aim of the "Rare Diseases in Bavaria" campaign is therefore to raise awareness of rare diseases and its patients in society in a concerted, low-threshold and large-scale manner in 2023, he said. Dr. Claudia Regenbogen, medical guide of the Center for Rare Diseases at Klinikum rechts der Isar, pointed out that awareness and information campaigns are also important for the medical profession to perceive rare diseases with more priority: "Medical training in the field of rare diseases often falls behind, because the training density is usually too high." Prof. Dr. Julia Höfele, Acting Director of the Institute of Human Genetics at MRI/TUM also motivated the patients to share their experiences with others and to network.

In conclusion, Erich Irlstorfer, a long-standing member of the German Bundestag's Health Committee and his parliamentary group's expert on rare diseases, emphasized: "People affected by these very diseases may be rare, but they are not alone. I would like to send out this signal and, together with patient organizations and self-help groups, lay the groundwork for improved research, diagnosis and care. I would like to thank all those involved for their active support in the interests of patients and their families, and I look forward to the Year of Rare Diseases 2023.

The campaign

The aim of the campaign "Rare Diseases in Bavaria" is to sensitize society in 2023 in a concerted, low-threshold and large-scale manner for rare diseases and its patients. Interested cities, markets and communities in the districts of Freising, Pfaffenhofen a.d. Ilm and Neuburg-Schrobenhausen will each be assigned a rare disease represented by a self-help group or patient organization. Both will then organize an event in the coming year with the support of MdB Erich Irlstorfer. This can be an information booth, a professional exchange or a digital format. In essence, the aim is to make patients with rare diseases heard and draw attention to their situation.

Photos: Office Erich Irlstorfer MdB
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