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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)
5 Fte (6)
Lobbyists with EP accreditation
2
High-level Commission meetings
0
Lobbying Costs over the years
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Info
International Federation for Spina Bifida and Hydrocephalus (IF)
EU Transparency Register
718277924839-56 First registered on 19 Dec 2016
Goals / Remit
The mission of the International Federation for Spina Bifida and Hydrocephalus (IF) is to improve the quality of life of people with spina bifida and hydrocephalus (SBH) and their families and to reduce the prevalence of neural tube defects and Hydrocephalus by primary prevention, by raising awareness and through political advocacy, research, community building, and human rights education.
Main EU files targeted
European Accessibility Act
European Pillar of Social Rights
European Solidarity Corps
Cross-border healthcare directive
European Semester
European Disability Strategy
Work-Life Balance Directive
Council Directive 2000/78/EC of 27 November 2000 establishing a general framework for equal treatment in employment and occupation
Multiannual Financial Framework
European Health Union
Recovery Plan for Europe
European Disability Card and the European Parking CardAddress
Head Office
Cellebroersstraat 16 16 rue des Alexiens
Brussels 1000
BELGIUMEU Office
Cellebroersstraat 16 16 rue des Alexiens
Brussels 1000
BELGIUMWebsite
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People
Total lobbyists declared
6
Employment time Lobbyists 100% 4 50% 2 Lobbyists (Full time equivalent)
5
Lobbyists with EP accreditation
All Lobbyists with EP accreditation over time
2 accreditations were / are live (in bold) for the selected state of 27 Jul 2024
Name Start date End Date Hildur ÖNNUDÓTTIR 13 Mar 2024 12 Mar 2025 Sylvia ROOZEN 13 Mar 2024 12 Mar 2025 Hildur ÖNNUDÓTTIR 20 Jul 2022 20 Jul 2023 Sylvia ROOZEN 20 Jul 2022 20 Jul 2023 Ms Carmen CLEMENTE 25 Sep 2019 25 Sep 2020 Athina Giannoutsou 07 Jun 2019 06 Jun 2020 Ms Jana Moravcova 23 Jan 2017 18 Jan 2018 Complementary Information
Secretary-General: Legal presentative; external networking and representation; primary contact EU Members, healthcare professionals, and partners; financial and human resources responsibilities; day-to-day management.
EU Policy Officer: Monitoring political insights; developing policy documents and legislative proposals; liaison between the SG and relevant EU institutions, ensuring that voices of persons with SBH are heard in policy-making.
Admin Officer: Responsible for office matters; provides administrative support in finances, practical arrangements for events, travel and accommodation, and HR matters;
Communications Coordinator: Responsible for external communication processes; social media pages; dissemination of programme activities and results; monitoring analytical data; primary contact for press and communication officers from external organisations and members;
Programme Officer/Manager: Responsible for general coordination and management of the programme activities.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
IF is a member of
European Patients Forum (EPF)
European Disability Forum (EDF; also board membership)
International Disability Alliance (IDA; also Board membership)
The European Organisation for Rare Diseases (EURORDIS)
Food Fortification Initiative (FFI; also Board membership)
Rare Diseases International (RDI)
International Disability and Development Consortium (IDDC)
Partnership for Maternal, Newborn and Child Health (PMNCH)
Partnership with UN Women Disability Inclusion (UN Women)
Partnership WHO RDI Collaborative Global Network (WHO GNC4RD)
IF holds a Special Consultative Status at the Economic and Social Council of the United Nations
WHO Civil Society Commission
WHO Africa Non-State ActorMember 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
635,322€
Major funding types in closed year
EU funding
Major contributions in closed year
Type Name Amount Grant Citizens, Equality, Rights and Values programme 346,010€ Major contributions in current year
Type Name Amount Grant Citizens, Equality, Rights and Values Programme 383,740€ Other financial info
IF receives funds from the European Commission 4-year agreement under the Citizens, Equality, Rights and Values programme (CERV) 2022-2025.
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EU Structures
Groups (European Commission)
Disability Platform#E03820#https://ec.europa.eu/transparency/expert-groups-register/screen/expert-groups/consult?lang=en&groupID=3820 #Member #C#Civil society#Sub-group on Independent Living
Groups (European Parliament)
Disability
Communication activities
IF Events & Trainings:
- Webinar World Folic Acid Awareness Week: Preventing Birth Defects and Saving Lives: Folic Acid-Preventable Spina Bifida, Anencephaly
- IF webinar women in conflict and crisis
- WHA76 Side Event
- COSP IF Side Event: Reaching Out Together: Advancing Rights-Based Advocacy in Underserved Communities through Transnational Twinning
- IF RELAEBI Webinar series
- Regional IAOM meetings
- World Spina Bifida and Hydrocephalus Day Conference and regional Side Events
- IF Members Training on Advocacy & Fundraising
- EU-Ukraine Webinar Series
Statements:
- IF Statement on Conflict and Humanitarian Crisis
- IF Statement on Strengthening Rehabilitation in Health Systems for persons with Spina Bifida
Reports and Information Resources:
- IF Annual Report 2022
- IF Press Release WHA76.19 Resolution
- IF social media reels for a call for global action
- IF members training materials on fundraising
- IF Membership Guide 2023
- IF WHA76.19 Resolution Information Booklet
Campaigns & Toolkits:
- IF Toolkit World Birth Defects Day
- IF Toolkit Siblings Day
- IF Toolkit International Youth Day
- IF Toolkit International Day of Older Persons
- IF Toolkit World Spina Bifida and Hydrocephalus Day
- IF Toolkit International Days for Persons with Disabilities
- IF Toolkit on a Draft WHA Resolution on Safe and Effective Food Fortification
Scientific Publications:
- IF publication in the Percentiel magazine ‘Voedselverrijking met foliumzuur voor de preventie van neurale buisdefecten: voorkomen beter dan genezen’
- IF conference abstract keynote presentation ‘Surveillance Research and NTDs Prevalence Estimates around the World’ at the International Clearinghouse for Birth Defects Surveillance and Research Conference
- IF conference abstract ‘Mental Health of Persons with Spina Bifida – A Systematic Literature Review’ presented at the International Children’s Continence Society
- IF conference abstract contribution session ‘WHA Resolution on Food Fortification‘ at the Micronutrient Forum’s 6th Global Conference
IF Contributions to Consultations:
- EC public consultation on the European Disability Card initiative;
- IF response to the consultation: Evaluation of the EU's External Financing; Evaluation of the EU's External Financing Instruments for the 2014-2020 and 2021-2027 multiannual financial frameworks - Public Consultation;
- IF Response to the CRPD Consultation. Call for written submissions for the preparation of a general comment on persons with disabilities in situations of risk and humanitarian emergencies;
- IF Consultation Submission to the call for inputs on peacebuilding;
- Consultation UN Open-Ended Working Group on Ageing;
- IF UN Consultation Community 2030;
- IF input to the EDF statement on Mental Health (EDF recommendations for European Commission’s call for evidence on mental health).Other activities
None declared
Meetings
Meetings
None declared