Patient Organisations Research Group (PORG)
In 2016, PORG was formally established as a working group of CF Europe with the responsibility to lead to research-related work on the European level. This working group consists of representatives from national CF patient organisations that are actively involved in research and in research funding.
Currently, the participating countries are Belgium, France, Germany, Italy, Luxembourg, Netherlands, Switzerland, and UK. The current chair is Vincent Gulmans from the Dutch CF Foundation (NCFS). The group meets twice a year and reports to Board of CF Europe.
CFE members are updated on PORG’s activities and strategic objectives during the annual meeting, on the website and in regular newsletters.
PORG aims to help facilitate and create partnerships across European member organisations in order to:
- Enlarge and stabilise the European CF research network
- Accelerate access to new medicines for people with CF through research
In order to reach these goals several work packages were defined, with clear goals and deliverables and an accountable work package leader.
List of Workpackages (PDF-files)
- Workpackage 1: European patient research priorities
- Workpackage 2: Collaboration with ECFS Patient Registry
- Workpackage 3: Collaboration with the CTN
- Workpackage 4: European Young Investigators’ Meeting
- Workpackage 5: Basic Science Preconference Meeting
- Workpackage 6: Biobanking
- Workpackage 7: Research Funding / collaborative research projects