“Knowledge is the key for a better life” is a three-year project carried out by the International Federation for Spina Bifida and Hydrocephalus (IF) thanks to the European Commission Programme PROGRESS. The project involves 30 European Members, National Associations of people with disabilities. This group of Disabled People Organizations (DPOs) represents 25 different European Countries and around 250.000 people. Thanks to diverse activities starting from 2011, IF has reached two main results:

  1. The capacity of DPOs of people with Spina Bifida & Hydrocephalus to influence policy making at national and European level have been increased as well as their knowledge on structural funding, aging with disability, access to employment, health care for adults, and social inclusion.

  2. The advocacy and campaigning skills of the DPOs of people with Spina Bifida & Hydrocephalus to promote rights of people with disabilities towards policy makers at national and international level have been substantially improved thanks to the establishment of the World Spina Bifida and Hydrocephalus Day and new campaigning opportunities. 

Studies and Research

Survey report Impact of cross-border healthcare on persons with disabilities and chronic conditions (2016)

Survey report Right to health: Reality of persons with spina bifida and hydrocephalus (2016)

EY2013: IF survey report on the Active and Healthy EU citizens

Publication: Compilation of laws implemented and Actions undertaken by European Member States on disability

Launch event: Act against Europe’s most common birth defects: one year on

Position Paper: Ageing with Spina Bifida and Hydrocephalus, No Time To Lose

"We call on European and national policymakers to:

  • recognise that the ageing and expanding group of persons with Spina Bifida and Hydrocephalus is facing increasing and serious challenges to live healthy lives and fulfil their potential and that swift action is required;

  • end health inequalities now by ensuring that all persons born with Spina Bifida and Hydrocephalus have access to the appropriate treatment, care and support, provided to them in multidisciplinary clinics;

  • promote social inclusion and employment of adults with Spina Bifida and Hydrocephalus, starting with the promotion of inclusive education and rehabilitation for children and adolescents with these conditions"

Training activities

Workshop: The European Structural Fund for Disabled People Organizations in Europe. A moment to increase knowledge on how to use structural funding for people with disabilities.

Symposium: Spina Bifida and Hydrocephalus Anno 2011 

Workshop: Adults, and now? Building Capacity for DPOs in Europe of people with Spina Bifida and Hydrocephalus on employment and aging. Sharing good example of projects in Europe and learning how to use UNCRPD at national level as an advocacy tool for the rights of people with disabilities.

Workshop: Fundraising for Non-Profit Associations

Workshop: Multi-profile team work with young grown-ups in the context of modern medicine

Exchange of good practices and cooperation

Workshop: "It's our Year, give us a voice! " Active citizenship through the equal access to healthcare

Conference Report: Broadening the accessibility of healthcare for all people with disabilities

Workshop: Making our network stronger - Raising awareness on prevention

Conference: Finding Our Way. A two day international conference with around 400 people involved

Photo exhibition: networking event at the EP in Strasbourg on the occasion of 1st World Spina Bifida and Hydrocephalus Day

Photo exhibition:  WHO for the first World Spina Bifida and Hydrocephalus Day

Conference: Ethics of hope coorganised with LUMOS

Awareness-raising, information and dissemination

Article: Fighting disease with education in The Parliament Magazine

Article: Unfolding potential in The Parliament Magazine

Article: Spina Bifida and Primary Prevention in Orphanet Journal of Rare Diseases

IF Annual Report 2011 "Opening doors" A great overview of IF activities and achievements in 2011

Advocacy Tool to help disabled people organizations of people with Spina Bifida and Hydrocephalus to advocate for their rights

Presentation at the Council of Europe hearing

Concert to raise awareness of Spina Bifida and Hydrocephalus

IF Annual Report 2012 "Finding our way" A summary of actions undertaken by IF in 4 main areas: Prevention, Human Rights, International Solidarity and Network Development

Article on PUSH project and its Ambassador in La Repubblika

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