Respiratory diseases are among the most common reasons to seek medical advice. Common complaints such as asthma, bronchitis or pneumonia can often easily be identified and treated.
This doesn’t apply for the more than 100 rare lung diseases. A disease is called rare disease if less than 1 of 2,000 persons is affected. Especially in childhood only very few doctors will have the necessary diagnostic and therapeutic experience to diagnose and treat these rare conditions.
In the EU alone, about 30 million people are affected by a rare disease. However, awareness of the severity and extent of these often inherited, chronic diseases in society is hardly present. And the medical knowledge on rare diseases isn’t sufficient, yet.
As a result, patients often encounter challenging difficulties: the correct diagnosis can often be made only after a long time and countless medical contacts. Even after the correct diagnosis is established, effective and proven therapies are hardly available.
Anyhow quality of life and life expectancy of most patients can be considerably improved by appropriate measures. In the treatment of some diseases such as cystic fibrosis impressive progress has been achieved. This is our driving force.
We want to help to ensure that research efforts will be intensified and that the social perception is strengthened.
We also want to help you to find appropriate physicians, dietitians, physiotherapists, social workers, and others.
Please look through the following pages and contact us if you have any further questions.