New help program for rare diseases

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Numerous measures are designed to help those affected by rare diseases

Around four million people in Germany suffer from one of around 8,000 so-called rare diseases. The National Action Plan for People with Rare Diseases (NAMSE) "comprises a total of 52 measures to tackle the most pressing problems of those affected and their relatives," according to the latest press release from the Federal Ministry of Health. One of the stated goals is to provide doctors and patients with better information so that the people concerned can make a reliable diagnosis more quickly.

The Federal Minister of Health Daniel Bahr, the Parliamentary State Secretary at the Federal Ministry of Research Dr. Helge Braun and the chairman of the Allianz Chronic Rare Diseases (ACHSE) e.V. Christoph Nachtigäller presented to the public today. In addition to improving information, medical care structures are to be expanded and competencies bundled. In addition, an intensification of research in the field of rare diseases is planned, according to the current decision.

Solutions for the problems of people with rare diseases "The National Action Alliance for People with Rare Diseases has succeeded in proposing solutions for the most pressing problems of almost four million people affected here in Germany alone," emphasized the Federal Minister of Health. Since these diseases are very rare, we have to expand existing skills and bundle them in centers and networks, according to Daniel Bahr. In this way it should be achieved "that patients can be diagnosed more quickly and then receive the necessary care." For those affected, the rare diseases have so far often been linked to a real odyssey through the health system, since many doctors are unaware of the symptoms and little knowledge is available about possible treatment approaches.

8,000 different rare diseases known According to the Federal Ministry of Health, a "disease is considered rare, if not more than five out of 10,000 inhabitants in the European Union suffer from this disease." About 5,000 to 8,000 of such diseases are known. The "rare diseases form a very heterogeneous group of mostly complex clinical pictures", which have in common "that they are usually chronic, are associated with disability and / or limited life expectancy and often lead to symptoms even in childhood," reports the Ministry. Around 80 percent of the rare diseases are genetically or partly caused. In August 2009, the Federal Ministry of Health published a research report entitled "Measures to improve the health situation of people with rare diseases in Germany", which analyzed the care situation of people with rare diseases in Germany and identified priority areas for action and suggestions for improvement.

Better prevention, diagnostics and therapy required According to the Federal Ministry of Health, the study at the time “came to the conclusion that in the pluralistically structured healthcare system of Germany, sustainable improvements in prevention, diagnostics and therapy of rare diseases can only be achieved if initiatives are successfully bundled and integrated to bring about joint, coordinated and goal-oriented action by all actors. ”This should now be done by decision of the National Action Plan. "The action plan takes concrete measures to offer these people better care," emphasized the Federal Minister of Health.

Intensification of research The Parliamentary State Secretary Dr. When the decision was presented, Braun explained that "an important key to achieving the goals of the National Action Plan is in research and development". The Federal Ministry of Research has therefore provided project funding of up to 27 million euros by 2018 for national and European research cooperation. The intensification of research should contribute to elucidating the disease mechanisms, identifying genetic causes and developing new diagnostic and therapeutic methods. So far, “researchers have been able to identify more than 70 genes that cause disease, creating the basis for more accurate diagnoses and new therapeutic approaches. However, the knowledge of many of these rare diseases has so far been incomplete and there is still a lot to be done, ”emphasized Dr. Brown.

Action plan involves those affected. The decision of the national action plan was well received by those affected and by ACHSE e.V. It is to be welcomed that the "National Action Plan has succeeded in focusing on patients' concerns and finding needs-based solutions," emphasized Christoph Nachtigäller, Chairman of ACHSE. The specialist added that in the case of rare diseases there is great expertise among those affected, who collect information and experience from necessity and form networks. "This expertise has become part of the national plan," Nachtigäller continued. Those responsible also hope for a significant improvement for the patients from the development of an "Atlas Rare Diseases", which is to provide an interactive map of an overview of the care landscape in Germany. This will make it much easier to find the right contact person in the future. (fp)

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Video: Rare Disease Diagnosis Patient Journey


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