Right to health

Our Commitment

Every person born with Spina Bifida and/or Hydrocephalus (SBH) has the right to the highest
attainable standard of health, as guaranteed under the UN Convention on the Rights of
Persons with Disabilities (CRPD). IF works with families, clinicians, researchers, and
policymakers to ensure this right becomes a reality, everywhere and at every stage of life.

1. Multidisciplinary & Lifelong Care

What is Multidisciplinary Care?

Children and adults with SBH require coordinated care from a range of specialists—including
neurology, urology, orthopaedics, psychology, rehabilitation, and social support. IF
advocates for integrated, accessible, age-appropriate care systems with strong transition
pathways from paediatric to adult care.

Patient-Centred Care & Family-Led Guidance

IF works to ensure that the patient perspective is embedded from the very beginning of
clinical guideline development. Collaborating closely with healthcare professional
organisations, IF contributes to guidelines that reflect both medical expertise and the lived
experiences of persons with SBH.

In addition, IF is developing a family-led patient journey guideline, created by parents for
parents, which maps the real-life experiences of care and supports families in navigating
services confidently.

Mental Health

Mental health remains a highly unmet need in many countries. Lack of understanding,
stigma, and inaccessible services result in preventable distress, anxiety, and depression. IF
promotes mental health inclusion through awareness, research, and practical guidance for
families and professionals.

2. Advocacy for the Right to Health

IF engages at national, European, and international levels to ensure persons with SBH can
access timely, affordable, high-quality care and assistive technologies.

Our Advocacy Priorities

• Recognition of essential devices (e.g., catheters) as assistive technologies
• Cross-border healthcare rights
• Implementation of CRPD Article 25
• Inclusion in EU health and disability strategies
• Monitoring the EU Directive on Cross-Border Healthcare
• Promoting accessibility through the European Accessibility Act
• Ensuring patients’ voices guide health policy and research

3. Partnerships & Expert Collaboration

Global & Policy Partnerships

• WHO Disability Health Equity Network: IF is an active member of the WHO
  Disability Health Equity Network, working alongside global health actors to reduce
  health inequities faced by persons with disabilities. Through this partnership, IF
  contributes expertise on SBH, promotes inclusive health systems, and supports
  evidence-informed policymaking at global level.

Medical and Scientific Collaborations

• Urology (EAU): improving continence management and lifelong urological care
• ERN eUROGEN & ERN ITHACA: advancing rare disease care and harmonised
  European guidelines
• IF Genetics Advisory Group: building expertise on genetic and congenital aspects
  of SBH

Patient Involvement in ERNs

IF participates actively in the European Patient Advocacy Groups (ePAGs) to ensure patient-
centred decision-making in specialised care across Europe.

Working Groups & Clinics

IF supports clinical working groups dedicated to improving diagnosis, treatment pathways,
and the development of management guidelines for SBH.

4. Resources

A curated selection of reports, publications, webinars, advocacy tools, and practical
guidance materials related to health, care, and rights. Contact us in case you look for
something else.

• IF Statement “Response to the WHO Consultation on the Assistive Products Priority List” (2025)
• New Paediatric Urological Guidelines for Children and Adolescents with Spina Bifida
  (2025)
• Genetics Factsheet by the IF Genetics Advisory Group (2025)
• Kuala Lumpur Declaration (2024)
• IF Statement on Strengthening Rehabilitation for SBH in Health Systems (2023)
• IF Statement on Multidisciplinary Care for Spina Bifida and Hydrocephalus (2021)
• Reflection paper on mental health (2017): “Knowledge is key: understanding mental health and wellbeing of people with spina bifida and hydrocephalus and their families”
• Right to Health report (2016): “Right to health: reality of persons with Spina Bifida and Hydrocephalus”
• Impact of cross-border healthcare (2016): “Impact of cross-border healthcare on persons with disabilities and chronic conditions”
• Video ”Maternal Health & Folic Acid” (2022)
• Video “Reclaiming my Health” (2017) as part of the World Mental Health Day
• Webinars, training sessions, and practical tools