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Discover the latest updates and important developments from the global Spina Bifida and Hydrocephalus community.

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Strong commitments at the Global Disability Summit 2025

This week the Global Disability Summit (GDS) takes place in Berlin Germany. The GDS represents a pivotal opportunity to advance disability inclusion on a global scale. The active involvement and participation of civil society, particularly Organisations of Persons with Disabilities (OPDs), is crucial to ensuring the Summit’s success.

The 2025 list of Countries for review by the CRPD Committee

National SBH Associations play a key role in monitoring the implementation of the UNCRPD! You can learn more about this process in the IF Information Package on the UNCRPD and the reporting cycle. Check the agenda to see which countries come for review by the CRPD Committee in 2025.

Leaving No One Behind in Montenegro

Being a UN member and having an EU candidate status made Montenegro ratify numerous international treaties in the area of human rights, and some progress towards the improvement of disability rights was made. However, as it happens sometimes, political processes are strongly influencing the realisation of human rights, and the Montenegrin case was not an exception.

Creating collaboration through the Clinical Patient Management System

The Clinical Patient Management System, or CPMS for short, is a secure web-based tool via which allows multidisciplinary teams of experts across the European Union to discuss individual cases involving rare or low prevalence complex diseases or conditions.

The Coalition in Support of the WHA Rare Diseases Resolution

IF has recently joined the Rare Diseases International Coalition in support of the adoption of the WHA Resolution on Rare Diseases, which will be discussed at the World Health Assembly (WHA) in May 2025.

Election Time!

The International Federation for Spina Bifida and Hydrocephalus (IF) is looking for a board member in preparation for the upcoming elections scheduled for June 2024.

Service Clubs in Action for Spina bifida

Today, on Rotary's 120th anniversary, we are happy to launch the publication 'Service Clubs in Action for Spina Bifida: Prevention and Care'. This publication aims to explore our common vision of a fruitful future collaboration, building on the already existing strong partnerships between Service Clubs and people with Spina Bifida and Hydrocephalus (SBH) and their families that go back decades.

Obituary Notice - Björn Ründström

It is with sadness that we announce the passing of our founding father Björn Ründström. Björn was a pioneer of the International Federation for Spina Bifida and Hydrocephalus (IF) and will be greatly missed. Our heartfelt sympathy and thoughts are with his family and friends.

Just launched! New peadiatric urological guidelines for children and adolescents with Spina Bifida

It is with great pleasure that we announce the publication of the updated pediatric urological guidelines addressing key challenges in the care of children and adolescents with Spina Bifida. IF calls upon all relevant medical specialists to endorse and implement the principles outlined in these new guidelines.