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European Pulmonary Fibrosis Federation

Acronym: EU-PFF

General Information

Identification Code: 098968923496-04
Website: [object Object]
Entity Form: Association
Registration Category: Non-governmental organisations, platforms and networks and similar
Registration Date: 9/20/2016
Last Update: 12/14/2023
EP Accredited Number: 0

Mission & Interests

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
Interests Represented: Does not represent commercial interests
Interests:
  • Public health
  • Research and innovation
Levels of Interest:
  • european

Activities

Main EU Legislative Proposals: Defending the interests of IPF 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
Inter-institutional or Unofficial Groupings: N/A

Head Office

Address: Abstratt 127
Post Code: 3090
City: Overijse
Country: BELGIUM
Phone: [object Object]

EU Office

Address: Birkenleiten, 435th floor
Post Code: 81543
City: Munich
Country: GERMANY
Phone: [object Object]

Financial Data

New Organisation: false
Closed Year: [object Object]
Current Year: [object Object]
Complementary Information: During 2022 the financial year was changed from June-May to Jan-Dec for 2023. For 2022 there are 2 reports which includes a short financial year from Jun2022 to dec2022. The information above represent information May21-Jun22

Membership Information

Members10 Percent: 0
Members25 Percent: 1
Members50 Percent: 0
Members75 Percent: 0
Members: 1
Members F T E: 0.25
Info Members: Liam Galvin is acting as CEO

Structure

Structure Type: Structure
Is Member Of: All member organsiations and associated partners are listed here: https://www.eu-pff.org/our-members/
Organisation Members: 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, the CEO, is also a member of the ELF Patient Advisory Committee.