MdB Irlstorfer wants to sensitize the population to so-called rare diseases.
Now he has given the starting signal for this in the district.
Freising
– There are currently around 8,000 so-called rare diseases and four million people affected in Germany. In Bavaria alone, 650,000 people spend up to eight years on the agonizing search for a diagnosis that can save them.
And starting next year, the CSU member of the Bundestag, Erich Irlstorfer, would like to give these people more visibility with a mammoth project.
What he came up with could actually lead to a massive increase in awareness of rare diseases.
For the start of his "Rare Diseases Bavaria" campaign, Irlstorfer got extremely prominent support as patron of the project in the barrel vault of the Schafhof on Thursday: the former Federal President Horst Köhler and his wife Eva Luise.
"I have one goal: that we no longer talk about the orphans of medicine," emphasized the MdB.
"Serve in Public"
80 percent of rare diseases are genetically caused or partly caused, they are rarely curable.
"What we need now is publicity," explained Irlstorfer, and this would only work with people who would make the topic much more visible.
What he has in mind, he told the FT in advance by telephone: "I would like to give every community in the districts of Freising, Pfaffenhofen and Neuburg-Schrobenhausen one of these rare diseases."
(By the way: everything from the region is now also available in our regular Freising newsletter.)
But what does that mean?
Self-help groups, those affected and those interested can contact his team, who will then set up high-profile events on the selected rare diseases in 2023 - whether information stands, panel discussions or digital formats.
Around 40 self-help groups have already contacted Irlstorfer.
"Now I just want to try to give these diseases a face," emphasized Irlstofer.
The fact that he and his wife invested their winter holidays in this event also made it clear how important the matter is to him.
The Foundation
"I am happy and grateful to be able to support this campaign with the patronage," emphasized Eva Luise Köhler, who has been involved with her husband for a long time in this extensive and neglected topic of medicine - among other things through their common Foundation for People with Rare Diseases.
Whereby: For them, on closer inspection, with five million people affected in Germany, the rare diseases are anything but rare.
"Patients go to eight doctors within seven years on average, until a diagnosis is finally found," reported the patron.
"Here, an unbelievable amount of suffering arises for each individual." For her, the focus is therefore on further research and the expansion of special centers in which interdisciplinary case conferences then lead to rapid success.
Positive news that Eva Luise Köhler brought with her: "A national register for rare diseases is to be created shortly, with which the types and frequencies can then be better documented." become the focus of medicine.
After a short panel discussion with Dr.
Claudia Rainbow from Klinikum Rechts der Isar and Prof. Dr.
Julia Höfele from the Schwabing clinic about rare diseases, around 200 interested people exchanged views with those affected and self-help groups.
The Holledauer Hopfareisser, the Gessler Buam and the Moosburger Liedertafel provided the musical accompaniment.
Richard Lorenz
