29 May 2019
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.
28 May 2019
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.
27 May 2019
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).
23 May 2019
On 18-19 May, IF was in Belgrade for its first European workshop of 2019. Prevention, human rights, sexuality and ageing with SBH were some of the topics addressed during this intensive workshop!
22 May 2019
IF is very happy to announce that our Secretary General has been re-elected in the Boards of Directors of EURORDIS, which is now focusing on promoting holistic care for people living with rare diseases all over Europe.
25 April 2019
People born with spina bifida and hydrocephalus are at risk of accelerated ageing and need to be protected against financial hardship and institutionalisation
8 April 2019
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!
14 March 2019
Yesterday 13th of March the European Accessibility Act was approved by the European Parliament. Even if there is still a long way to go, a first step towards creating a more accessible and inclusive Europe is done!
11 March 2019
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.
Get quarterly updates about all matters relevant to Spina Bifida and Hydrocephalus.
Get quarterly updates about all matters relevant to Spina Bifida and Hydrocephalus.
