Overview
Lobbying Costs
250,000€
Financial year: Jan 2019 - Dec 2019
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 Idiopathic Pulmonary Fibrosis & Related Disorders Federation (EU-IPFF)
EU Transparency Register
098968923496-04 First registered on 20 Sep 2016
Goals / Remit
The Association serves the following social and scientific non-profit aims, of international utility:
a) Supporting an immediate and sustainable improvement of the quality of life and survival time of IPF patients, and of patients suffering from other interstitial lung diseases, through directly influencing pharmacological and medical research and development, as well as the access to non-pharmacological assistance for patients.
b) 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 IPF patient associations
- supporting the establishment of patient associations in countries where no such associations exist
To achieve these goals, the association will undertake the following (...)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 IPF patient associations
- supporting the establishment of patient associations in countries where no such associations existAddress
Head Office
Abstratt 127
Overijse 3090
BELGIUM -
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 the EU-IPFF Secretary and his voluntary contribution to the work of the federation is unpaid.
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
III - Non-governmental organisations
Subcategory
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-IPFF 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-IPFF is a member of EURORDIS.
Liam Galvin, the EU-IPFF Secretary, is also a member of the ELF Patient Advisory Committee.Member organisations
None declared
-
Financial Data
Closed financial year
Jan 2019 - Dec 2019
Lobbying costs for closed financial year
250,000€
Other financial info
Corporate funding: approx 600k€
Total projects costs: 743k€
Leftover at the end of 2019: 197k€ -
EU Structures
Groups (European Commission)
none
Groups (European Parliament)
N/A
Communication activities
None
Other activities
None declared
- Meetings
Meetings
None declared
- Meetings