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: Jan 2023 - Dec 2023
Lobbyists (Full time equivalent)
0.25 Fte (1)
Lobbyists with EP accreditation
0
High-level Commission meetings
0
Lobbying Costs over the years
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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 levelMain 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 existAddress
Head Office
Abstratt 127
Overijse 3090
BELGIUMEU Office
Birkenleiten, 435th floor
Munich 81543
GERMANYWebsite
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People
Total lobbyists declared
1
Employment time Lobbyists 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
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Categories
Category
Non-governmental organisations, platforms and networks and similar
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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
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Financial Data
Interests represented
Does not represent commercial interests
Closed financial year
Jan 2023 - Dec 2023
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
544,585€
Major funding types in closed year
Member's contributions, Other
Funding types "other" information
Sponsorships
Major contributions in closed year
Type Name Amount Contribution Boheringer Ingelheim 216,000€ Contribution Bristol Myers Squibb 95,000€ Contribution Chiesi 38,625€ Contribution CSL Behring 85,000€ Contribution F. Hoffmann - La Roche 40,000€ Contribution Trevi Therapeutics 54,960€ Other financial info
The information above represent information Jan-Dec 2023.
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EU Structures
Groups (European Commission)
None declared
Groups (European Parliament)
N/A
Communication activities
None declared
Other activities
None declared
Meetings
Meetings
None declared