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For this year Rare Disease Day we invite you to join us in raising awareness and spreading the voice about rare diseases, such as spina bifida and hydrocephalus!

IF Secretary General was at the United Nations headquarters in New York for the Annual Meeting of Rare Diseases International, where he gave a speech focused on how to integrate rare diseases into the United Nations (UN) Convention on the Rights of Persons with Disabilities (CRPD) based on the experience of IF.

The World Birth Defects Day (WBDD) is approaching, and we decided to create a social media toolkit to support everyone who wants to make their voice heard!

2019 marks the 10-year anniversary of the Smarter Futures partnership in which Nouryon collaborates with the International Federation for Spina Bifida and Hydrocephalus (IF), Helen Keller International (HKI), and the Food Fortification Initiative (FFI) to improve and increase availability of fortified wheat, maize flour and rice that meets quality and nutrition standards in Africa.

We were in Madrid this November for our European Workshop, this year focused on continence management and ageing with spina bifida and hydrocephalus.

The SBH community has lost one of its exemplary members with the passing away of disability advocate Tom Baroch