Platform for rare diseases founded

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Platform for rare diseases founded

Rare diseases are still largely neglected in conventional medicine. Intensive research in the field of rare diseases mostly does not promise any economic benefit for the pharmaceutical industry. In order to nevertheless offer affected patients an exchange of knowledge and experience, employees of the Chair of Information Systems at the Friedrich Alexander University in Erlangen-Nuremberg have founded an "online platform for rare diseases". Around four million people in Germany suffer from rare and sometimes poorly researched diseases.

Together for the Rare Employees of the Friedrich Alexander University have launched the "Together for the Rare" initiative to offer patients and family members a comprehensive exchange of knowledge in the form of an Internet forum. Because together, quite a few people count the fate of a rare disease. According to the definition of the European Union (EU), rare diseases (“orphan disease”) are diseases that affect less than 2,000 people nationwide (Formula 5 out of 10,000 people). Each disease in itself affects only a small fraction of the total population. Around 4 million people in Germany suffer from this disease, and experts estimate that there are around 36 million people across the EU. In 80 percent of cases, the diseases are provoked by congenital genetic defects. Such genetic dispositions include, for example, glass bone disease, cystic fibrosis, progeria (early aging) and amyotrophic lateral sclerosis (degenerative disease of the motor nervous system). These diseases mostly appear in early childhood.

Diseases are often discovered late. Children, in particular, are afflicted with mostly incurable diseases. Until the cause of the disease was discovered, many children and parents had a real odyssey of different visits to the doctor, because many doctors are initially overwhelmed and at a loss. It often takes several years for an actual diagnosis to be made. But even after the diagnosis has been made, patients are often left alone with their needs, fears and worries. Most research institutions in the pharmaceutical industry show little interest in researching these, in some cases, serious illnesses, because there is no financial interest for the corporations due to the small number of patients. The fewer people are affected by a disease, the lower the sales of pharmaceuticals. The pharmaceutical lobby mostly base their reluctance on the unequal relationship between research funding and the later market for medicines.

To date, around 30,000 diseases have been scientifically discovered worldwide, including around 8,000 rare diseases, some of which have hardly been researched further. The "Together for the Rare" initiative aims to improve the quality of life of patients with rare diseases and thereby activate both affected and non-affected people. In “Together for the rare” problems are sought on the one hand that those affected have to struggle with in daily life and on the other hand suggestions for solutions to overcome these problems. These solutions come from other people affected, their families - and everyone else who wants to help: Together for the rare! ”

Who can participate in “Together for the rare”? Everyone can participate in the design of the forum “Together for the rare” to help those affected by rare diseases. The initiative is designed to bring together patients, relatives, nurses, doctors, scientists, therapists and educators. Because many sufferers and relatives often have to think about solution strategies in everyday life, these experience values ​​could also help other patients. In addition, doctors and scientists should be given the opportunity to search for strategies together with the patients and to exchange experiences that have already been made. Patients can also get to know fellow sufferers and find specialists. For many people, the new platform could offer a way to ensure their own survival because fellow patients or experts report on new treatment methods or therapeutic approaches. The new online platform could be a further step to help those affected and to better understand rare diseases. (sb)

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Image: Gerd Altmann /

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