Overview
Lobbying Costs
None declared
None declared
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.
The association may enter into contracts, purchase, lend or lease, pay salaries to employees other expenses, that are necessary to manage its affairs.
In addition, the association can undertake all activities that are directly or indirectly contribute to the realisation of the aforementioned social and scientific non-profit objectives, including additional commercial and profitable activities that are allowed by law and of which the profits shall always be used for the realisation of the social and scientific, not-for-profit objectives.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
None declared
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
None declared
Member organisations
• Action for Pulmonary Fibrosis (APF), with its registered office at Beechcroft, Westley, Bury St Edmonds, Suffolk, IP33 3TR Great Britain, Represented by Karen Hughes, Trustee, 109 Kineton Green Road, Solihull, West Midlands B92 7DT
• AMA - FUORI DAL BUIO, with its registered office at AOU Policlinico di Modena, Via del Pozzo 71, c/o Centro Malattie Rare del Polmone, 41124 Modena, Italy, represented by Rosalba Mele, President, Via del Pozzo 71, c/o Centro Malattie Rare del Polmone, 41124 Modena, Italy.
• Asociación de Familiares y Enfermos de Fibrosis Pulmonar Idiopática (AFEFPI), with its registered office at Tablas de Daimiel 2 – local 7, 28924 Alcorcón (Madrid), Spain, represented by Carlos Lines Millán, President, Tablas de Daimiel 2 – local 7, 28924 Alcorcón (Madrid), Spain.
• Association Belge contre La Fibrose Pulmonaire Idiopathique (ABFPI), with its registered office at Avenue Reine Astrid 77/9, 1410 Waterloo, Belgium, represented by Michel Faucher Viegas, President, Avenue Reine Astrid 77/9, 1410 Waterloo, Belgium.
• Association Pierre Enjalran pour la Fibrose Pulmonaire Idiopathique (A.P.E.F.P.I), with its registered office at 17, rue de la CAOUE, 31210 – ARDIEGE, France, represented by Françoise Enjalran, President, 17, rue de la CAOUE, 31210 – ARDIEGE, France
• Belgische Vereniging voor Longfibrose vzw (BVL), with its registered office at Jules de Cocklaan 95, B-9050 Gentbrugge, Belgium, represented by Herman Van Lysebeth, Board Member, Wolfshaegen 175A, B-3040 Neerijse, Belgium.
• British Lung Foundation (BLF), with its registered office at 73-75 Goswell Road, London, EC1V 7ER, Great Britain, represented by Ruth Sabella, IPF Project Manager, 73-75 Goswell Road London EC1V 7ER, Great Britain
• Irish Lung Fibrosis Association (ILFA), with its registered office at Lavery House, Earlsfort Terrace Dublin D02 T625, Ireland, represented by Liam Galvin, President, Lavery House, Earlsfort Terrace Dublin D02 T625, Ireland.
• Longfibrose NL, with its registered office at Stationsweg 127, 3800 AP Amersfoort, Netherlands, represented by Lida Naber, Project Manager, Stationsweg 127, 3800 AP Amersfoort, Netherlands.
• Lungenfibrose e. V., with its registered office at Postfach 150208, 45242 Essen, Germany, represented by Dagmar Kauschka, President, Postfach 150208, 45242 Essen, Germany.
• Lungenfibrose Forum Austria with its registered office at Dänekeplatz 5/14, 3052 Innermanzing, Austria; represented by Günther Wanke, President, Dänekeplatz 5/14, 3052 Innermanzing, Austria. -
Financial Data
Closed financial year
None declared
Lobbying costs for closed financial year
None declared
Other financial info
The financial year of the Association shall be from June 1 to May 31. The first financial year shall be from 15 July 2016 to 31 May 2017.
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EU Structures
Groups (European Commission)
None
ACC
None
Groups (European Parliament)
None
Communication activities
None
Other activities
None declared
Meetings
Meetings
None declared