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.
9 May 2019
Promoting inclusive ski lessons for youth with physical disabilities to learn new skills, build confidence, and improve health for all.
26 April 2019
This month Athina Giannoutsou joined our team! She will be IF's European Policy Officer, becoming the main liaison between our European members and the EU institutions.
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
16 April 2019
Former Environmental Minister Guro Fjellanger, born with spina bifida, passed away much too soon at the age of 55.
9 April 2019
Our Italian member organisation ASBI will coordinate a skiing project named “SKI for ALL”, part of the Erasmus+ Sport program and intended for children and young people with SBH or traumatic injuries.