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Rare Disease Day

29 February is “Rare Disease Day” – The day of action for rare diseases

CSL Behring employees at the Marburg, Bern and Lengnau sites show solidarity towards our patients, raising awareness for Rare Disease Day
CSL Behring employees at the Marburg, Bern and Lengnau sites show solidarity towards our patients, raising awareness for Rare Disease Day

29 February 2020 will mark the 13th Rare Disease Day. The international day of action aims to raise awareness of rare diseases and of the people affected by them. Rare diseases are life-threatening or chronic conditions that affect fewer than 5 in 10,000 people. Around 300 million people suffer from a rare disease. In terms of the world population, this means a share of about five percent. Germany has four million known cases. This is roughly equivalent to the population of Berlin.

The term “rare disease” is an umbrella term that covers about 7,000 diseases. As only a few people worldwide suffer from each specific rare disease, little is known about disease patterns, symptoms and treatment options. As a result, rare diseases often go undiagnosed or not diagnosed correctly. Sufferers often have a journey of many years, often punctuated by multiple misdiagnoses, before the correct diagnosis is made. The period before the receiving the correct diagnosis is often described by those affected and their relatives as particularly difficult. Without a diagnosis, no targeted treatment is possible, and the uncertainty and feeling of being alone with an unknown disease means an additional burden for patients that cannot be underestimated.

The correct diagnosis usually represents a turning point in the patient’s life. It gives the patient a certain level of understanding about the disease, enabling them to talk to other sufferers and, most importantly, offering the chance of targeted treatment. Treatment with specific drugs gives many patients with rare diseases the opportunity to lead an almost normal and independent life.

At CSL Behring, we have been committed to helping people with rare and serious diseases for over 100 years. We are constantly researching and developing medicines and treatments to save lives and improve the quality of life of our patients and their families. Our recombinant and plasma-derived products can treat clotting disorders, immune deficiencies and other chronic rare diseases, helping many people around the world.

On Rare Disease Day, patient networks, associations and companies around the world organize events to raise public awareness about rare diseases and the impact they have. For us at CSL Behring, this is also an opportunity to network, talk about rare diseases and raise both our own and the public’s awareness. To this end, we have not limited our activities to the day itself, but are using the entire month of February to raise awareness about rare diseases. Day after day, we are using our digital channels to tell our patients’ stories, report on their progress, give advice to those affected and call for commitment. 

Kathrin Schön, a HAE patient, is one of approximately 300 million people who suffer from a rare disease. In the video, she explains why it is important to raise awareness for rare diseases and the role Rare Disease Day plays in this.