European Pulmonary Fibrosis Federation
Budget
€954,702
EP Access
0
accredited persons
Staff
2
0.5 FTE
EU Grants
None
Mission & Goals
-Promoting access to accurate and unbiased information on PF care - Advocating for the rights of PF patients and carers and involvement of patients in key healthcare decisions - Improving access to treatment and services, including non-pharmacological treatment and medication across European countries - Facilitating information exchange and collaboration between European and international PF patient associations - Fostering collaboration with scientific experts and medical societies - Supporting the establishment of patient associations in countries where there is no representation EU-PFF defends the rights of patients across Europe* by advocating for an immediate and sustainable improvement of the quality of life and survival time of those with progressive Pulmonary Fibrosis (PF) whilst also promoting awareness of Interstitial Lung Diseases (ILDs) generally and defending the interests of PF patients from across the continent at a pan-European level
EU Legislative Interests
Defending the interests of PF patients at European level with emphasis on: - access to treatment and services, including non-pharmacological treatment and medication - access to information on new and current trials - promotion of research into new treatment/medication - information exchange and collaboration between European and international PF patient associations - supporting the establishment of patient associations in countries where no such associations exist
Interests Represented
Does not represent commercial interests
Member Of
ERN-LUNG (European Reference Network on Rare Pulmonary Diseases) covers a wide range of rare lung diseases and features a sub-group on interstitial lung diseases that also includes IPF. EU-PFF works together with ERN-LUNG as an ePAG: an elected patient representatives who will ensure that the patient voice is heard throughout the ERN development process. EU-PFF is a member of EURORDIS. EU-PFF is a member of the EMA Patients' and Consumers' Working Party (PCWP) Liam Galvin, a Board Member, is also a member of the ELF Patient Advisory Committee.
Organisation Members
All member organsiations and associated partners are listed here: https://www.eu-pff.org/our-members/
Additional Information
The information above represent information Jan-Dec 2024.
Commissioner Meetings
No recorded meetings with EU commissioners.