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Take part in our survey on person centred paediatric urological guidelines for spina bifida (now available in 11 languages!)

Collaboration of the International Federation for Spina Bifida and Hydrocephalus with the European Association of Urology (EAU), ERN eUROGEN, and the ERN ITHACA on person centred paediatric urological guidelines for spina bifida. It is a unique collaboration whereby we actively involve persons with spina bifida and/or hydrocephalus and their families to improve the existing guidelines in making them more patient centred. In this way, the spina bifida and hydrocephalus community is actively involved in the development of this survey study from the beginning onwards.

IF MEMBERS TRAINING: FROM LOCAL TO GLOBAL – HOW TO INFLUENCE INTERNATIONAL ACTIONS THROUGH NATIONAL ADVOCACY

The IF members training “From local to global - how to influence international actions through national advocacy” taking place on May 6 2022 provided an overview of key concepts and processes of international organisations.

IF Annual Report 2021 is now available!

IF Annual Report 2021 highlights all of IF activities and achievements of the past year. The year 2021 was an active one with many activities and challenges. Some of the activities were affected by the COVID-19 pandemic. Therefore, IF organised its activities in a digital format. These activities such as an escape room meeting, training opportunities, international awareness days, and the IF conference for persons with SBH on multidisciplinary care were well-received. Here, in this annual report 2021, the actions achieved for human rights, primary prevention, optimising management and care, raising awareness, as well as international solidarity are highlighted.

Global Disability Summit side event organised by IF "Advancing disability rights through multidisciplinary care"

On February 16 2022, International Federation for Spina Bifida and Hydrocephalus (IF) organized the side event Advancing Disability Rights Through Multidisciplinary Care as part of the Global Disability Summit 2022.

Celebrate the International Women's Day on March 8th 2022

Each year, the International Federation for Spina Bifida and Hydrocephalus (IF) celebrates the International Women’s Day (#IWD) on March 8th 2022 together with our Global Community and IF Women Focus Group Discussions. We are calling YOU to join us, the activists, leaders, innovators and change-makers working every day to build an equal future.

The International Day of Persons with Disabilities 2021

Today on December 3rd, the International Federation for Spina Bifida and Hydrocephalus (IF) celebrates the International Day of Persons with Disabilities (IDPD). The United Nations General Assembly declared this day in 1992 (by resolution 47/3) with the goal to promote the rights and well-being of people with disabilities in all aspects of society and development, as well as to raise awareness about their position in political, social, economic, and cultural life.

The European Day of Persons with Disabilities 2021

The European Commission together with the European Disability Forum organise a conference for the European Day of Persons with Disabilities. Held on 2-3 December, the 2021 European Day of Persons with Disabilities focuses on the topics of access to healthcare and digital transformation. 

IF Statement on Multidisciplinary Care

From 14 to 17 September 2021 the International Federation for Spina Bifida and Hydrocephalus (IF) held a conference on multidisciplinary care.  Multidisciplinary care (MDC) for persons with Spina Bifida and Hydrocephalus (SBH) is essential in order to achieve ‘the highest possible standard of health’ (article 25 UN Convention on the Rights of Persons with Disabilities) for the global SBH community.