6 March 2025
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.
1 March 2025
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.
28 February 2025
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.
23 February 2025
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.
18 February 2025
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.
12 February 2025
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.
7 January 2025
On January 7, 2025, IF held a webinar ‘Leaving No One Behind’, dedicated to World Folic Acid Awareness Week, that provided invaluable expertise and experience from the public, private, and civic sector representatives. The theme “Leaving No One Behind” emphasised the importance of ensuring efforts to prevent Neural Tube Defects (NTDs) are sustained and maternal health outcomes are inclusive, equitable, and accessible to all individuals, regardless of their geographic location, socioeconomic status, or level of awareness.
12 December 2024
According to the recent WHO Global Report on Health Equity for Persons with Disabilities, approximately 1.3 billion people worldwide live with significant disabilities, and far too often, they face avoidable inequalities such as limited access to healthcare services, systemic biases, and physical, social, and institutional barriers. Addressing these injustices is not only a moral imperative but also a necessity to achieve Universal Health Coverage (UHC) and the Sustainable Development Goals.
9 December 2024
Mental health is fundamental to overall well-being, enabling individuals to navigate life's challenges, realise their potential, and contribute meaningfully to their communities. However, for individuals with Spina Bifida and Hydrocephalus (SBH), the path to mental well-being is often obstructed by societal stigma, discrimination, and a lack of adequate support systems.
Get quarterly updates about all matters relevant to Spina Bifida and Hydrocephalus.
Get quarterly updates about all matters relevant to Spina Bifida and Hydrocephalus.
