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Overview
WARNING: As this organisation lists one or more EP accredited lobbyists, it may not be probable that its lobbying costs are lower than €10,000.
Lobbying Costs
9,999€
Financial year: Mar 2013 - Mar 2014
Lobbyists (Full time equivalent)
3.5 Fte (4)
Lobbyists with EP accreditation
0
High-level Commission meetings
0
Lobbying Costs over the years
-
Info
International Federation for Spina Bifida and Hydrocephalus (IF)
EU Transparency Register
866892813257-10 First registered on 12 Mar 2014
Goals / Remit
The International Federation for Spina Bifida and Hydrocephalus (IF) is the worldwide umbrella organisation (INGO) for Spina Bifida and Hydrocephalus organisations. It was created in 1979 by national organisations of people with these impairments and their parents. Today IF's members consist of 50 regional and national umbrella organisations for Spina Bifida and Hydrocephalus. Furthermore, IF has intensive contact with regional and national organisations in over 50 countries, spread over five continents.
IF's activities are focused on the dissemination of information and expertise throughout the world to families, individuals, professionals and volunteers involved in the field of Hydrocephalus and Spina Bifida.
IF Mission
IF mission statement: Improving the quality of life and primary prevention are the motivation for everything IF undertakes. This is the same for the IF member associations.
The most important way to fulfil that mission is to spread knowledge and to encourage contact between parents and persons with Spina Bifida and/or Hydrocephalus.Main EU files targeted
cross border healthcare, everything dealing with patients rights, disability
Address
Head Office
rue des Alexiens, 16
Brussels 1000
BELGIUM -
People
Total lobbyists declared
4
Employment time Lobbyists 100% 2 75% 2 Lobbyists (Full time equivalent)
3.5
Lobbyists with EP accreditation
All Lobbyists with EP accreditation over time
0 accreditations were / are live (in bold) for the selected state of 08 Sep 2024
Name Start date End Date Ms Inmaculada Concepcion Lopez Oton 11 Jun 2015 09 Dec 2015 Ms Janina Arsenjeva 23 Oct 2014 21 Oct 2015 Ewa Anna Kampelmann 24 May 2014 05 Jun 2015 Complementary Information
None declared
Person in charge of EU relations
Ms Arsenjeva Janina (Projects Manager)
Person with legal responsibility
Mr Bauwens Lieven (Secretary General)
-
Categories
Category
III - Non-governmental organisations
Subcategory
Non-governmental organisations, platforms and networks and similar
-
Networking
Affiliation
None declared
Member organisations
None declared
-
Financial Data
Closed financial year
Mar 2013 - Mar 2014
Lobbying costs for closed financial year
9,999€
EU grant income for closed financial year
150,000 € (Source: -)
Other financial info
None declared
-
EU Structures
Groups (European Commission)
None
ACC
None
Groups (European Parliament)
None
Communication activities
None
Other activities
“Knowledge is the key for a better life” is a three-year project carried out by the International Federation for Spina Bifida and Hydrocephalus (IF) thanks to the European Commission Programme PROGRESS. The project involves 30 European Members, National Associations of people with disabilities. This group of Disabled People Organizations (DPOs) represents 25 different European Countries and around 250.000 people. Thanks to diverse activities starting from 2011, IF has reached two main results:
The capacity of DPOs of people with Spina Bifida & Hydrocephalus to influence policy making at national and European level have been increased as well as their knowledge on structural funding, aging with disability, access to employment, health care for adults, and social inclusion.
The advocacy and campaigning skills of the DPOs of people with Spina Bifida & Hydrocephalus to promote rights of people with disabilities towards policy makers at national and international level have been substantially improved thanks to the establishment of the World Spina Bifida and Hydrocephalus Day and new campaigning opportunities.
Below we listed some of the main activities developed under the framework of “Knowledge is the key for a better life”.
Studies and Research
EY2013: IF survey report on the Active and Healthy EU citizens
Publication: Compilation of laws implemented and Actions undertaken by European Member States on disability
Launch event: Act against Europe’s most common birth defects: one year on
Position Paper: Ageing with Spina Bifida and Hydrocephalus, No Time To Lose
Training activities
Workshop: The European Structural Fund for Disabled People Organizations in Europe. A moment to increase knowledge on how to use structural funding for people with disabilities.
Symposium: Spina Bifida and Hydrocephalus Anno 2011
Workshop: Adults, and now? Building Capacity for DPOs in Europe of people with Spina Bifida and Hydrocephalus on employment and aging. Sharing good example of projects in Europe and learning how to use UNCRPD at national level as an advocacy tool for the rights of people with disabilities.
Workshop: Fundraising for Non-Profit Associations
Workshop: Multi-profile team work with young grown-ups in the context of modern medicine
Exchange of good practices and cooperation
Workshop: "It's our Year, give us a voice! " Active citizenship through the equal access to healthcare
Conference Report: Broadening the accessibility of healthcare for all people with disabilities
Workshop: Making our network stronger - Raising awareness on prevention
Conference: Finding Our Way. A two day international conference with around 400 people involved
Photo exhibition: networking event at the EP in Strasbourg on the occasion of 1st World Spina Bifida and Hydrocephalus Day
Photo exhibition: WHO for the first World Spina Bifida and Hydrocephalus Day
Awareness-raising, information and dissemination
Article: Fighting disease with education in The Parliament Magazine
Article: Unfolding potential in The Parliament Magazine
Article: Spina Bifida and Primary Prevention in Orphanet Journal of Rare Diseases
IF Annual Report 2011 "Opening doors" A great overview of IF activities and achievements in 2011
Advocacy Tool to help disabled people organizations of people with Spina Bifida and Hydrocephalus to advocate for their rights
Presentation at the Council of Europe hearing
Concert to raise awareness of Spina Bifida and Hydrocephalus
IF Annual Report 2012 "Finding our way" A summary of actions undertaken by IF in 4 main areas: Prevention, Human Rights, International Solidarity and Network Development
Article on PUSH project and its Ambassador in La Repubblika
Conference: Ethics of hope coorganised with LUMOS
See more details: http://ifglobal.org/en/what-we-do/if-projects/europe
Meetings
Meetings
None declared