Urgent appeal: Rare diseases in Austria need more research!
Urgent appeal: Rare diseases in Austria need more research!
The international day of rare diseases is just around the corner, and the alarm bells ring out loud! With up to 500,000 people affected in Austria, including 400,000 Europeans, the situation is serious. Johannes Steinhart, President of the Austrian Medical Association, warns that increasing economic constraints endanger the care. "People with rare diseases are particularly dependent on medical research, but the economic principle must not indicate the sound here," said Steinhart in a call for mobilization. These diseases, of which there are over 6,000, urgently require innovative therapies that have to be developed both regionally and beyond national borders, such as reports the press
pioneering work in research
The situation is alarming! There are no specific treatment options for 95 percent of the rare diseases. Companies such as AOP Orphan Pharmaceuticals GmbH ("AOP Health") have been working intensively for over 25 years to close this gap. Martin Steinhart, CEO of AOP Health, emphasizes the urgency: "In order to ensure the supply of medication, regional research programs and a strong pharmaceutical industry are essential." Innovative diagnostic procedures and personalized medicine are not only a trend, but essential for the progress in the treatment of rare diseases. Hopefully, these developments could lead to patients better medical answers and possibly even a modification of their illnesses.
The key to improving patient care also sees medicine in the timely transfer to specialized EU centers, where experts take over the treatment with extensive experience. Prof. Irene Lang from the Med-University Vienna explains: "Patients benefit enormously from the expertise in these centers." In order for the concerns of the patients concerned to be heard, organizations such as Pro Rare Austria rely on a dialogue between scientists and patient representatives. Claas Röhl, a prominent representative of this group, emphasizes: "Our perspective is unique and should be better taken into account in research." The increasing attention to the needs of this patient group is a positive sign in a much too long neglected area of medicine, which now urgently needs our attention, as in a current message from ots for the upcoming day on February 28th.
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