On 29 February 2020 Rare Disease Day will be taking place for the 13th time. The aim of this global day of action is to raise awareness of rare diseases and the people affected by them. Rare diseases are life-threatening or chronic illnesses that affect fewer than five in 10,000 people. Around 300 million people suffer from a rare disease. This is about five percent of the world’s population. Four million cases are known in Germany, which is roughly the same as the population of Berlin.
“Rare disease” is an umbrella term that covers about 7,000 different diseases. Because only a few people worldwide suffer from each specific rare disease, little is known about the pathologies, symptoms and options for treatment. This means that rare diseases are often diagnosed incorrectly or not at all. A correct diagnosis may take years of persistence, often marked by many false diagnoses. Sufferers and their relatives often describe the time before they could put a name to their illness as the most difficult. Without a diagnosis, targeted therapy is not possible, and the uncertainty and feeling of being left alone with an unknown disease is an additional burden for patients that should not be underestimated.
An accurate diagnosis is usually a turning point in the life of the patient. The diagnosis makes the disease understandable: it enables them to talk to other sufferers and – most importantly – brings the opportunity for targeted therapy. Many patients with rare diseases can then lead a more or less normal and independent life thanks to therapies with specific drugs.
We at CSL Behring have been committed to helping people with rare and serious diseases for more than 100 years. To save lives and improve the quality of life of our patients and their families, we are constantly researching and developing new drugs and treatment methods. With our recombinant and plasma-derived products, we can treat coagulation disorders, immunodeficiencies and other chronic rare diseases, helping many people all over the world.
On the day of action, patient networks, associations and companies around the world organise events to raise public awareness of rare diseases and their impact. For us at CSL Behring, this is also an opportunity to get to know each other, to talk about rare diseases, and to raise our own awareness and that of the public. This is why we haven’t limited our activities to the day itself, but are using the whole of February to draw attention to rare diseases. Every day, we’re using our digital channels to tell our patients’ stories, to report on their outcomes, to give advice to people affected and to appeal for engagement.
