Latest news

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.

The 30th International Conference on Spina Bifida and Hydrocephalus took place from October 24 to 26 in Kuala Lumpur Malaysia. Together, we discussed strategies for adressing gaps in healthcare and prevention, while promoting a multidisciplinary approach that places our community at its core. Our heartfelt congratulations to SiBIAM as hosting association. This conference was a starting point for future meetings whereby we continue building bridges together!

On May 27 IF together with its partners organised an in-person WHA side event titled ‘Congenital Anomalies and Universal Health: Leaving No One Behind’. During this side event on May 27th, 2024 it was discussed what resources are needed to serve children born with congenital anomalies around the globe in need of lifelong care, and how to advocate with policymakers for their inclusion in the universal health coverage agenda.

During the WHA77 IF Secretary General discussed joint approaches to ensure social protection for food security and nutrition for all!

On November 6 2023, Dr Sylvia Roozen - Secretary General of the International Federation for Spina Bifida and Hydrocephalus emphasised in her keynote address the important role ICBDSR members have on surveillance research to inform NTD Prevention & Care.

On July 15, 2022, IF held an experience exchange and sharing webinar named ‘IF webinar Learning from Experience: Strategic Advocacy for Primary Prevention’. The webinar was an experience exchange and twinning opportunity for all IF members, in which representatives from Africa, Asia-Pacific, Latin-America and Europe who have advanced their national advocacy for primary prevention shared their key element of success, the process, lessons learned and advice for all participants.