Trustee Karen Hughes attends first European Idiopathic Pulmonary Fibrosis Federation meeting in Brussels
Last week Karen Hughes, one of the charity’s trustees, attended the first General Assembly Meeting of the EU-IPFF (European Idiopathic Pulmonary Fibrosis Federation) to represent Action for Pulmonary Fibrosis in the UK.
11 members attended from 9 European countries to discuss the next action to be taken to support and reinforce the points made in the European IPF Charter a couple of years ago.
The group met to agree a 3 year workplan aimed at urging members of the EU Commission to :
- Invest in IPF research to find its cause and cure
- Work with EU Member States to ensure that all IPF patients gain quick access to drugs approved by EU for IPF treatment
- Improve access to lung transplantation and other non drug-related treatments across the region
Member States were also urged to recognise the importance of all IPF healthcare professionals.
The session ended with the a signing ceremony at the European Parliament in which each member of the Federation’s General Assembly signed a Written Declaration.
This was then presented to the Italian MEP Elena Gentile, who will personally present it to the EU Commission in April. (The timeline slide shows that this will then take 3 months to be adopted). Each of the Federation members will be lobbying all their local MEP’s to sign the declaration which is then fully adopted by 27th June this year. A response to it is then expected by the European Commission and Council by 9th September.
Karen said: ‘The signing was a very moving occasion and provides a perfect underpinning to the work that APF already started in the UK last summer following our patient survey. We have since then been working with UK MPs on the report’s findings to improve patient care across the country and this EU initiative raises our voice to the forefront of the European campaign to provide better expectations of life for IPF patients and their families’.