For patients an affected families
Our goal is to improve the care of children with rare lung diseases. Yet the medical knowledge on rare diseases is far from being sufficient. Many affected children suffer from the fact that their disease is diagnosed late or not at all.
But even after diagnosis proven therapeutic options are scarce. Still examples like cystic fibrosis demonstrate that both the quality of life and life expectancy of many patients can be improved dramatically.
This is our driving force. We want to contribute by collecting knowledge about BO and by making this knowledge available to everybody. We want to motivate people, to stand up for the lungs.
Obviously we cannot cope with this task alone. Therefore, we ask you for any kind of support that you can imagine. Please visit our Donate & help page and send us your comments on the Contact & Forum page.
With your help, we can succeed in our mission to increase research efforts and social perception for people with rare diseases.