Perspective of the European Cystic Fibrosis Society on Improving Global Cystic Fibrosis Care
Jane C Davies1, Egil Bakkeheim2, Audrey Chansard3,4
1National Heart & Lung Institute, Imperial College London, London, UK.
Introduction:
Outcomes for people with the inherited disease, cystic fibrosis, have improved greatly over the last few decades, but one result of this is a widening gap between regions with high income and well-resourced healthcare systems and low/middle income countries. The gap stretches from newborn screening programs, provision of standard diagnostics and genetic testing through to access to standard of care therapies.
Methods And Results:
This paper describes the various initiatives of the European Cystic Fibrosis Society: our Patient Registry, a Twinning Program linking centers from different regions and our Educational Program.
Conclusions:
The European Cystic Fibrosis Society recognizes this as a major issue and seeks through these programs to support colleagues, patients and families in low/middle income countries.
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