Perspective of the European Cystic Fibrosis Society on Improving Global Cystic Fibrosis Care
Abstract
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.
Fields of Study & Subjects
Cystic Fibrosis Research Advances
Genomics and Rare Diseases
Immunodeficiency and Autoimmune Disorders
Publication details
- Journal / source
- Pediatric Pulmonology
- Publisher
- Wiley
- Volume
- 61
- Issue
- 7
- Pages
- e71720–e71720
- Publication date
- 1 July 2026
- Language
- EN