Non-invasive therapeutic treatment for children with gene disorders

Offentlig prosjektsammendrag

There are very few therapeutical relief offers (avlastningstilbud) for children born with rare gene disorders, and medical knowledge and insight of treatment methods is limited. Highly specialized skills and many years of experience within acute medicine is required to work with such patients. We will develop deeper insight and competence among health workers into better treatment methods for children born with gene disorders through this project. For us it is important that such patients are not dependent on breathing support devices and ventilators for the rest of their life, but are able to live as normal a life as possible and interact with other healthy children. Not only is this of importance to the patients’ mental and physical health but also of utter importance to the parents of the aforementioned children.