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Our 2015-2017 Strategy

IF 3 years Strategy: Advocating, Convening, Building Capacity

Mental health

Reflection paper:
Knowledge is key: understanding mental health and well-being of people with spina bifida and hydrocephalus and their families

Access to healthcare

Active and Healthy EU Citizens - Survey Report
Disability and Healthcare Checklist
Booklet "This is a small story about life and death"

IF response to consultation on provision of support to persons with disabilities (2016)
IF reaction to the European Commission's proposal for the Accessibility Act (2016)
Right to health: Reality of persons with spina bifida and hydrocephalus (2016)
Impact of cross-border healthcare on persons with disabilities and chronic conditions (2016)

Folic Acid fortification

Fortify Grains to Prevent NTDs in Africa
Europe Flour Fortification Advocacy Brief
The Role of Folate and Flour Fortification to Reduce the Risk of Neural Tube Defect-affected Pregnancies in Europe: An Advocacy Summary + Annex 
IF Policy Statement on Prevention of Neural Tube Defects and Mandatory Food Fortification
FORTIMAS: An Approach for Tracking the Population Coverage and Impact of a Flour Fortification Program
Africa Maize Fortification Strategy 2017-2026

NTDs prevention

Act against Europe's most common birth defects: The right advice at the right time can reduce Neural Tube Defects now
Act against Europe's most common birth defects: One year on - Defining Neural Tube Defect prevention strategies in Europe
Folic Acid – What every woman needs to know before becoming pregnant (IFGPI Leaflet)

Transition to adulthood 

IF's submission to the CRC Committee on the rights of adolescents
IF's submission to the CRC Committee on the rights of adolescents (Spanish version)
Guide for Youth with Spina Bifida and Hydrocephalus in Africa


ABC of Equality
ABC of Advocacy
ABC of Communications

Healthy ageing with spina bifida and hydrocephalus

IF Position Paper on Healthy Ageing (2012)
IF Position Paper on Healthy Ageing (Spanish version)
IF Photo Catalogue "Unfold" World Spina Bifida and Hydrocephalus Day 2012
IF Statement on Multidisciplinary Care for Spina Bifida and Hydrocephalus (2016)

Right to Live

IF Policy Statement on the Right to Prenatal Diagnosis and the Right to be Different
IF Resolution on the Right to Live
IF Position Paper on the Groningen Protocol

Studies & Posters

Prevention of spina bifida: folic acid intake during pregnancy in Gulu district, northern Uganda (Bannink; 2015)
Experiences of children living with spina bifida and their parents in Uganda (Bannink; 2013)
Interdisciplinary care for children with spina bifida in East and Southern Africa (Mertens; Bannink; 2012)

SHIP - Spina Bifida and Hydrocephalus Interdisciplinary Program

SHIP General Presentation
SHIP Passport Girls | SHIP Passport Boys
Framework Hospital | Framework CBR | Framework PSG

Continence management

Clean Intermittent Catheterization  technique_manual for nurses
Also available in French and Spanish

Measuring bladder pressure_manual for nurses
Also available in French and Spanish

Oxybutynin_manual for nurses
Also available in French and Spanish

Spina Bifida CIC booklet
A practical guide for nurses and health workers to do clean intermittent catheterization (CIC)
Also available in French

Continence materials_guidelines

Cleaning and storing of continence materials_guidelines for nurses
Also available in French and Spanish

Bowel management_manual for nurses

Hydrocephalus & Spina Bifida

Spina Bifida- factsheet
Hydrocephalus- factsheet

Head circumference charts

Boys birth-13 weeks
Boys birth-5 years
Girls birth-13 weeks
Girls birth-5 years

SBH protocols

HC and SB management_protocol for surgeons
HC and SB management_guidelines for district hospitals
HC management_guidelines for distict hospitals
HC Treatment strategy_protocol for surgeons
Testing shunt valves_protocol for surgeons
Operation theater protocol_for surgeons


Welcome to School
Also available in Swahili

SB/HC Brochure for teachers


Promoting the Development of Children with SB and HC_WHO Manual for rehabilitation workers
Child Development Chart_Disabled Village Children (D.Werner, 2009)
Early Stimulation Activities_Disabled Village Children (D.Werner, 2009)
WHO Surgical Safety Checklist

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Events calendar


Annual Report 2017


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