Tomorrow is Rare Disease Day – we want to make a statement too!
Author
Marion Wilkens, Chairwoman Alpha1 Germany eV.
Rare Disease Day – Many diseases are rare
Under the motto "CRAVE IS MANY", ACHSE is calling on people nationwide to join the worldwide movement of affected individuals and their families on International Rare Disease Day: "300 million people worldwide live with a rare disease. So rare is not rare at all."„
Alpha1 Germany is also participating:
- Dessau at the Municipal Hospital on February 22, 2020; watch the TV coverage here.
- Hannover Medical School on March 6, 2020
- Leipzig University Hospital on February 28, 2020
- Dresden at the University Center for Rare Diseases on February 29, 2020
Rare diseases are defined as life-threatening or chronic illnesses that occur extremely rarely. In the European Union, a disease is considered rare if it affects a maximum of 5 out of 10,000 people.
Alpha-1 antitrypsin deficiency is considered a rare disease, primarily because so few affected individuals are identified. According to expert estimates, we are considered rare when looking at the actual number of affected individuals (approximately 2.5 out of 10,000). In Germany, it is estimated that around 20,000 people suffer from AAT deficiency. However, if we consider the genetic defect itself, then we are quite common: In Germany, almost one in 20 people is at least a carrier, meaning that on a full bus, there could be one or two affected individuals.
New flyer
To find more Alphas and reduce the number of undiagnosed COPD patients, we have created a new flyer. It can be easily printed and distributed wherever potential Alphas might be hiding. The download is available here.
