Topic of the Month March: Rare Diseases

 
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People with rare diseases and genetic especialness often wait a long time for a final diagnosis and live in a situation of permanent uncertainty.

Moreover, there is a lack of adequate medication and treatments. More about this issue at REHACARE.de in our Topic of the Month March: Rare Diseases.

Five to ten million people in the European Union suffer from rare diseases. Nobody knows the exact number, as nobody has counted the persons concerned as yet. Often it takes a long time until a diagnosis is established. Drugs are only seldom available. A regulation from the EU creates incentives to make research more attractive.
- The Orphan Amongst Drugs

She had always suspected that she was different from other people. With 21 she knew it for sure because of the medical records of her childhood and youth that she was never allowed to see herself and that was kept in the archives of a university hospital. That used to be the location to where she had to return every six months in order to be examined since she was four years old. Nobody ever told her why. "The worst was the uncertainty," she says today, "not the diagnosis." Which the 28-year-old received only seven years ago.
- CAIS: "The worst was the uncertainty"

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