International Federation for Spina Bifida and Hydrocephalus
Acronym: IF
General Information
Identification Code: 718277924839-56
Website: [object Object]
Entity Form: ivzw
Registration Category: Non-governmental organisations, platforms and networks and similar
Registration Date: 12/19/2016
Last Update: 3/7/2024
EP Accredited Number: 2
Mission & Interests
Goals: 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.
Interests Represented: Does not represent commercial interests
Interests:
- Education and training
- Employment and social affairs
- Humanitarian aid and civil protection
- International co-operation and development
- Justice and fundamental rights
- Public health
- Research and innovation
- Trans-European Networks
- Transport
- Youth
Levels of Interest:
- global
Activities
Main EU Legislative Proposals: 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
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).
EU Supported Forums and Platforms: Sub-group on social services#E03820/5#https://ec.europa.eu/transparency/expert-groups-register/screen/expert-groups/consult?lang=en&groupID=104592 #MEMBER #C#Civil societyDisability Platform#E03820#https://ec.europa.eu/transparency/expert-groups-register/screen/expert-groups/consult?lang=en&groupID=3820 #MEMBER #C#Civil societySub-group on Independent Living#E03820/4#https://ec.europa.eu/transparency/expert-groups-register/screen/expert-groups/consult?lang=en&groupID=103715 #MEMBER #C#Civil society
Inter-institutional or Unofficial Groupings: Disability
Head Office
Address: Cellebroersstraat 1616 rue des Alexiens
Post Code: 1000
City: Brussels
Country: BELGIUM
Phone: [object Object]
EU Office
Address: Cellebroersstraat 1616 rue des Alexiens
Post Code: 1000
City: Brussels
Country: BELGIUM
Phone: [object Object]
Financial Data
New Organisation: false
Closed Year: [object Object]
Current Year: [object Object]
Complementary Information: IF receives funds from the European Commission 4-year agreement under the Citizens, Equality, Rights and Values programme (CERV) 2022-2025.
Membership Information
Members10 Percent: 0
Members25 Percent: 0
Members50 Percent: 2
Members75 Percent: 0
Members: 6
Members F T E: 5
Info Members: 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.
Structure
Structure Type: Structure
Is Member Of: Our members are legal entities
http://www.ifglobal.org/en/who-we-are/members/europe
Organisation Members: 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