European Pulmonary Fibrosis Federation

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Registration as it was on 14 Dec 2023
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Overview

Since 20 September 2021 self-declared 'non-commercial organisations' are no longer required to provide a lobby budget. See above timeline for this registrant's historical lobby budget.

Lobbying Costs

None declared

Financial year: Jun 2021 - May 2022

Lobbyists (Full time equivalent)

0.25 Fte (1)

Lobbyists with EP accreditation

0

High-level Commission meetings

0

Lobbying Costs over the years

  • Info

    European Pulmonary Fibrosis Federation   (EU-PFF)

    EU Transparency Register

    098968923496-04 First registered on 20 Sep 2016

    Goals / Remit

    -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

    Main EU files targeted

    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

    Address

    Head Office
    Abstratt 127
    Overijse 3090
    BELGIUM
    EU Office
    Birkenleiten, 43 5th floor
    Munich 81543
    GERMANY

    Website

  • People

    Total lobbyists declared

    1

    Employment timeLobbyists
    25%1

    Lobbyists (Full time equivalent)

    0.25

    Lobbyists with EP accreditation

    No lobbyists with EP accreditations

    Complementary Information

    Liam Galvin is acting as CEO

    Person in charge of EU relations

    Data not provided by Register Secretariat due to GDPR

    Person with legal responsibility

    Data not provided by Register Secretariat due to GDPR

  • Categories

    Category

    Non-governmental organisations, platforms and networks and similar

  • Networking

    Affiliation

    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.

    Member organisations

    None declared

  • Financial Data

    Interests represented

    Does not represent commercial interests

    Closed financial year

    Jun 2021 - May 2022

    Lobbying costs for closed financial year

    Since 20 September 2021 self-declared 'non-commercial organisations' are no longer required to provide a lobby budget. See above timeline for this registrant's historical lobby budget.

    Total organisational budget in closed year

    391,788€

    Major funding types in closed year

    Member's contribution, Other

    Major contributions in closed year

    TypeNameAmount
    Contribution Boehringer Ingelheim 157,870€
    Contribution Bristol Myers Squibb 30,200€
    Contribution CSL Behring 65,000€
    Contribution Hoffmann La Roche 98,202€
    Contribution Vicore Pharma 21,840€

    Other financial info

    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

  • EU Structures

    Groups (European Commission)

    none

    Groups (European Parliament)

    N/A

    Communication activities

    None

    Other activities

    None declared

  • Meetings

    Meetings

    None declared

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