The Rare Disease Day 2021 at SKCWorldwide, 28.02.2021
Years of searching for the right answer, uncertainty, shaken confidence and often a certain loneliness are only a sample of the experiences and feelings that people with rare diseases and their relatives are often exposed to. Caught in a clinical picture that only a few specialists of a research discipline know about and most of the time even fewer are able to recognize and treat correctly, it is important not to lose courage and to know that people are thinking of me as a patient. This is one of the reasons why Rare Disease Day is coming up again in about one week, when people around the world will come together to use bright colors to make a statement against this loneliness - this year for the 14th time.
But what does rare mean? Rare means about 6,000 individual diseases with less than one patient per 2,000 inhabitants. But rare also means an incredible number of 300 million people worldwide. Rare is therefore ultimately one person out of a group of 25 and yet not so rare anymore. This low incidence of disease patterns means that the development of therapies is often not attractive and research in these areas is underfunded. Adding to this definition of rare, the high complexity inherent in many of these diseases complicates scientific development. 72% of rare diseases are genetic in origin - 70% occur early in a patient's life.
At SKC, we believe that this definition of rare is worth investing resources and energy to improve the lives of these many people. A way to achieve improvement here is to create awareness, of which the diseases often lack. Therefore, in the coming week, we will present six different rare diseases in order to make people more aware of them. Furthermore, we will donate 2.000 EUR to the Center for Rare Diseases at the Hannover Medical School. However, attention is not only created by words and deeds, but also by colors. That's why you can see us here in the bright neon colors of the event as a prelude to Rare Disease Day 2021.s.