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Action Coalition for People with Rare Diseases founded

on 08/03/2010, the Federal Ministry of Health (BMG), the National Action Coalition for People with Rare Diseases (NAMS) was founded. Philipp Rösler (FDP), who gave the go-ahead for the new project, said: "The Suffering of those affected begin with the lack of diagnosis. The Action Alliance is to improve the situation of those affected significantly. "

Quote:

" ... With NAMS there the first time a co-ordination and communication body for rare diseases. This has the task to combine existing Initiatvien and link the work of researchers and doctors better. It was important that information for doctors and patients would be brought together. "Doctors are often overwhelmed with rare diseases," said Roesler. For patients, this meant a long odyssey, until they know what do they have the disease. This should then be clarified that there ... "
(Source: ärztezeitung.de)

Eva Luise Köhler, the patron said of this project:

Quote:

" ... important component of NAMS are self-help groups ... There is access to information, diagnosis and therapy, the patients need and feel that they, with their often serious illnesses, which hardly anyone knows taken seriously and not allowed to be alone ... "
(Source: ärztezeitung.de)

also stressed the action plan on participating in research-based pharmaceutical company that those affected are still disadvantaged in many cases.

From the Federation of Pharmaceutical Industry (BPI), it states:

Quote:

"... Especially for the care of people with rare diseases, it is important that the different partners to work in healthcare ... "

the entire online article, you can reach behind the following link Action Coalition for People with Rare Diseases (NAMS)