Rare disease day on February 28th: show your rare – show you care

Wed, 2018 / 02 / 28

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Ihr Ansprechpartner Prof. Matthias P. Schönermark, M.D., Ph.D.

Prof. Matthias P. Schönermark, M.D., Ph.D.
Founder and Managing Director

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The worldwide rare disease day takes place on February, 28^th. A rare disease is a life-threatening or chronically debilitating disease and of which less than five (in the EU) or 7.5 (in the USA) of 10,000 inhabitants are affected. Altogether, more than 6,000 rare diseases currently exist, of which 80% are based on genetic defects.

So far, there is no cure for the majority of the rare diseases and only a few treatments are available. It proves to be extremely difficult to receive solid research data about the impact of developed medicines. Hence a network of patients and researchers across country borders is being sought which is supported by different institutions like for example the EU.

The rare disease day was initiated in 2008 to raise the awareness for rare diseases and their impact on patient’s lives. The campaign has received great encouragement since its launch: in more than 75 countries different events are taking place on February, 28^th 2018, some of them in Germany. The slogan “show your rare – show you care” shall remind of the importance of international cooperation of all parties for the affected patients.

The SKC Beratungsgesellschaft has been supporting pharmaceutical companies for many years by making so-called orphan drugs for rare diseases for German patients available.

BY Prof. Matthias P. Schönermark, M.D., Ph.D., Founder and Managing Director of SKC Beratungsgesellschaft mbH and Karolin Priese, SKC Beratungsgesellschaft mbH

Sources:
Rarediseaseday: What is a rare disease
European Commission: Rare diseases