Latest news

People born with spina bifida and hydrocephalus are at risk of accelerated ageing and need to be protected against financial hardship and institutionalisation

This years' World Health Day was focused on Universal Health Coverage (UHC). We joined the European Patients' Forum (EPF) and six other patients organisations, asking together for UHC in Europe and all over the world!

It's time to approve the Work-Life Balance Directive! Now that a first important step in the right direction has been taken, IF joins COFACE Families Europe and 11 other NGOs in calling for a swift adoption of the directive.

At the end of May we are all called to vote for the European elections 2019 and IF strongly encourages European people with SBH to vote. Let's make make sure that the EU will become an inclusive society for all!

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.