Overview
Lobbying Costs
250,000€
Financial year: Jul 2017 - May 2018
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 activities:
- exchanging information and collaborating with relevant European and international organisations and bodies
- involving patients in research activities and studies to improve current treatment options for IPF patients
- representation in relevant European and international organisations
- organisation of symposia, workshops, educational and training events for different stakeholders
- providing information, e.g. via a website
- publishing materials such as leaflets, brochures, books, audio-visual materials, etc.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
Jules de Cocklaan 95
Gentbrugge B-9050
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
Mr Liam Galvin (Secretary)
Person with legal responsibility
Mr Liam Galvin (Secretary)
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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
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Financial Data
Closed financial year
Jul 2017 - May 2018
Lobbying costs for closed financial year
250,000€
Other financial info
The financial year of the Association runs from June 1 to May 31. The first financial year provided an exception with the financial year running from 15 July 2016 to 31 May 2017.
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EU Structures
Groups (European Commission)
none
Groups (European Parliament)
None
Communication activities
None
Other activities
None declared
- Meetings
Meetings
None declared
- Meetings