International Federation for Spina Bifida and Hydrocephalus

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Registration as it was on 07 Mar 2024
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The following entries are flagged as duplicates of this organisation: 866892813257-10 93086892756-13

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

  • 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 Card

    Address

    Head Office
    Cellebroersstraat 16 16 rue des Alexiens
    Brussels 1000
    BELGIUM
    EU Office
    Cellebroersstraat 16 16 rue des Alexiens
    Brussels 1000
    BELGIUM

    Website

  • People

    Total lobbyists declared

    6

    Employment timeLobbyists
    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 15 Jun 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

  • Categories

    Category

    Non-governmental organisations, platforms and networks and similar

  • 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 Actor

    Member organisations

    None declared

  • 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

    TypeNameAmount
    Grant Citizens, Equality, Rights and Values programme 346,010€

    Major contributions in current year

    TypeNameAmount
    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.

  • 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

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