Upcoming Events

15th Scientific meeting - CFTR-Modulation and results of research projects funded by the Mukoviszidose e.V.
Thu, 2015-09-24 - Fri, 2015-09-25
6th South Eastern European CF Conference in Bucharest
Sat, 2015-09-19 - Sun, 2015-09-20
6th South Eastern European CF Conference in Bucharest
Sat, 2015-09-19 - Sun, 2015-09-20
Annual Meeting in Brussels
Tue, 2015-06-09 - Sat, 2015-06-13
First International CF Physiotherapy Workshop
Fri, 2015-05-01 - Sun, 2015-05-03
First International CF Physiotherapy Workshop
Fri, 2015-05-01 - Sun, 2015-05-03
First International CF Physiotherapy Workshop
Fri, 2015-05-01 - Sun, 2015-05-03
South Eastern European CF Conference - Thessaloniki
Sat, 2014-10-04 - Sun, 2014-10-05
14th Scientific Meeting
Thu, 2014-09-25 - Fri, 2014-09-26
14th Scientific Meeting
Thu, 2014-09-25 - Fri, 2014-09-26

Contact information

Hilde de Keyser

hilde.dekeyser@cf-europe.eu

0032 - (0)2 61 32 716

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NEWSFLASH: IMPACT FROM ORKAMBI ON BASIC DEFECT IN F508DEL MUTATION?

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.

 

The facts:

 

Which drug?

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.

 

‘Major step on the road to cure Cystic Fibrosis’


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.