Latest news

We are looking for young people (18-35) living with SBH in Europe who want to become more self-confident and independent!

Contribute to our exploratory European study on ageing with spina bifida and hydrocephalus!

On12-14 June, IF Secretary General was in New York for the 12th session of the Conference of State Parties (COSP) to the UN Convention on the Rights of Persons with Disabilities (CRPD), an annual event focused on discussing the progress on the implementation of the CRPD.

IF, together with five other organisations working in disability rights, sent an open letter to the Romanian government expressing grave concerns about the violations of human rights of young persons with disabilities in Romanian institutional care.

During a side event organised by Rare Diseases International at the 72nd World Health Assembly, IF Secretary General talked about the importance of data in the areas of care and prevention, in the frame of Universal Health Coverage.

IF’s response focuses on the key role of medical education in the primary prevention of neural tube defects and with regard to care for persons with spina bifida and hydrocephalus (SBH).