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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.

The WSBHD23 Conference brought together global communities to raise awareness about Spina Bifida and Hydrocephalus. IF members from the regions Africa, Americas, Asia-Pacific, and Europe shared their vision of “Accessibility4All” for this year’s WSBHD23! 

On September 16 2023, IF youth member LauraRosillo Beneyto represented the global disability community on behalf of IF and IDA at the youth pillar "Torchbearers for the SDGs: Meaningful Youth Engagement & the 2030 Agenda" during the SDG Action Weekend as part of the SDG Summit at the UN Headquarter in New York. Re-watch the speech by Laura here!

Today, the Commission has proposed the introduction of a European Disability Card as well as the enhancement of the current European Parking Card for persons with disabilities. Both cards will be recognised all across the EU and make it easier for persons with disabilities to travel across the European Union.

Are you passionate about working with persons with Spina Bifida and Hydrocephalus, engaging with international stakeholders, writing articles and designing materials?

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.