For a longer and better life with Cystic Fibrosis
Hilde de Keyser
0032 - (0)2 61 32 716
After a positive advice by one of the FDA commissions for Orkambi as treatment for CF patients with a double F508del mutation, a lot of communication has been going around about this potential drug for CF. In this article you find some background info on this therapy and what this could mean for the treatment of people with CF in the future.
Will new technology be able to improve health outcomes and quality of life of children with Cystic Fibrosis (CF) around Europe?
European Mobile App Project launched in 2015 to improve Health and Quaity of Life of children with Cystic Fibrosis.
Horizon2020, the EU Framework programme for Research and Innovation, approved the MyCyFapp project. A consortium of researchers, clinicians, ITC experts and patient representatives, to develop MyCyFAPP, a mobile application for children with CF allowing a personalized and accurate control and monitoring of their nutritional treatment.
Stem cells with Cystic Fibrosis have been repaired in the laboratory.
Researchers of the Dutch Hubrecht Institute and the University Medical Centre Utrecht
have been able to repair stem cells with Cystic Fibrosis. They have cut out the CFcausing
defect from intestinal stem cells and replaced it by a “healthy piece”. ‘This is
a major step in the road to cure Cystic Fibrosis. Very hopeful. Patients will not benefit
immediately, but technology is moving forward’, says Jacquelien Noordhoek, CEO of
the Dutch Cystic Fibrosis Foundation NCFS.