International Federation for Spina Bifida and Hydrocephalus

EU Legislative Interests

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 2021-2027 European Health Union Recovery Plan for Europe European Disability Card and the European Parking Card Web Accessibility Directive United Nations Convention on the Rights of Persons with Disabilities

Communication Activities

IF Events, Webinars, Trainings Regional Meeting for Southeastern Europe on Spina Bifida and Hydrocephalus Youth Group Advocacy Exchange Meeting Youth Group Bulgaria World Folic Acid Awareness Week Webinar "Leaving No One Behind!" Side event to the WHA78, “Accelerating Action on Micronutrient Deficiencies and Their Consequences, Including Spina Bifida: Delivering on WHA 76.19 through Large-Scale Food Fortification” Meet & Greet sessions for its Youth and Ageing Working Group International Day of Persons with Disabilities Webinar "Building Bridges: How Service Clubs Can Drive Change for Persons with Disabilities" International Women’s Day Webinar "Accelerate Action" International Youth Day Webinar "Dreaming Beyond Barriers" EU-Ukraine webinar series together with ERN ITHACA Working Group on Spina Bifida, ERN eUROGEN, and OMNI-Net Ukraine International Day of Older Persons Webinar "Living with Spina Bifida and Hydrocephalus: Our Lives, Our Choices" Members Webinar "Inclusive Employment and Skills for Life" World Spina Bifida and Hydrocephalus Day Conference and regional Side Events Annual IF Members Training “Empowering Advocacy: Voices of Persons with Spina Bifida and Hydrocephalus” IF Publications, Advocacy & Information Resources IF Membership Guide 2025 IF Toolkit World Folic Acid Awareness Week IF Toolkit World Birth Defects Day IF Toolkit International Women’s Day IF Toolkit International Youth Day IF Toolkit International Day of Older Persons IF Toolkit World Spina Bifida and Hydrocephalus IF Toolkit International Days for Persons with Disabilities IF Publication Service Clubs in action for Spina Bifida IF Genetics Factsheet IF Statement Response to the WHO Consultation on the Assistive Products Priority List IF Statement Towards a United Nations-recognised International Day for SBH IF Support to the youth position paper Scientific Publications - Systematic Literature Review on Mental Health among Persons affected by Spina Bifida (in preparation) - Abrahamson, et al. (2025). EAU – ESPU -ERN eUROGEN – ERN ITHACA – ERN ERKNet – IFSBH Guidelines on spinal dysraphism in children and adolescents. Clinical Guideline. EAU Guidelines Office, Arnhem, the Netherlands - ‘t Hoen, L., Radmayr, C., Gnech, M., .. Roozen, S., (2024). Assessing patient centered urological care for spina bifida: a collaboration between the European Association of Urology – European Society for Pediatric Urology (EAU-ESPU) pediatric urology guidelines panel and the International Federation for Spina Bifida and Hydrocephalus (IFSBH). Submitted. - Roozen, S., Johnson, Q., Ibrahim, E., Al Maamari, S., Barkat, A., Al Shammakhi, S., ... & Al Jawaldeh, A. (2025). Mandatory food fortification in the eastern Mediterranean region results in reduced prevalence of neural tube defects. Frontiers in Public Health, 13, 1664607. IF Contribution to Consultations WHO Disability Health Equity EU4Health 2025 Work Programme Global Disability Inclusion Report by IDA Disability Caucus Terms of Reference submitted to UNFCCC by IDA WHA78 Resolution on Rare Disorders Consultation on EDF Health Study Guidelines Report on the application of the Racial Equality Directive and Employment Equality Directive Consultation with DG EMPL Civil Dialogue on the EU Civil Society Strategy Ad Hoc Consultation of the European Commission Disability Platform Consultation on A New Action Plan to Implement the European Pillar of Social Rights Consultation on the European Child Guarantee Support recognition of European Cross Border Associations Consultation Communication Enhancing the Strategy for the Rights of Persons with Disabilities up to 2030

Interests Represented

Does not represent commercial interests

Member Of

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 Disability Health Equity Network WHO Civil Society Commission WHO Africa Non-State Actor

Organisation Members

Our members are legal entities https://ifglobal.org/members/

Additional Information

IF receives funds from the European Commission 3-year agreement under the Citizens, Equality, Rights and Values programme (CERV) 2026-2028.