15 November 2025
IF Secretary General, Dr Sylvia Roozen, joined the inaugural meeting of the WHO Disability Health Equity Network in Geneva, Switzerland.
13 June 2025
IF welcomes the WHO Consultation for the updated version on the Assistive Products Priority List (APL), in particular that it acknowledges catheters, and related accessories, as essential assistive products for persons living with Spina Bifida and Hydrocephalus (SBH).
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.
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.
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.
6 December 2023
With a new IF statement, IF stands as a precursor with its long-time focus on rehabilitation. Indeed, almost thirty years ago, IF contacted the World Health Organization and proposed to work together for producing a guide for mid-level rehabilitation workers, to be used for children with Spina Bifida and Hydrocephalus (SBH).
2 August 2023
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.
23 June 2022
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.
Get quarterly updates about all matters relevant to Spina Bifida and Hydrocephalus.
Get quarterly updates about all matters relevant to Spina Bifida and Hydrocephalus.
