2 November 2016 // More research in prevention and improvements in care needed to achieve the next turning point by the global community of Spina Bifida and Hydrocephalus.
During the past three days Ghent hosted almost 300 participants of the Turning Points Conference. It was already the 27th International Conference on Spina Bifida and Hydrocephalus. The debates were very innovative, frank and sometimes emotional. One of the highlights of this weekend was the official launch by HRH Princess Astrid of Belgium of the first Global Prevention Initiative.
Several important meetings took place: IF Youth Group, IF Global Experts Panel, Working Group International Solidarity, IF EU workshop, and the workshop for SBH clinicians on multidisciplinary care, foetal surgery and European Reference networks.
28 October 2016 // Today marks the launch of an exciting new worldwide initiative from the International Federation for Spina Bifida and Hydrocephalus (IF), the first of its kind to tackle the primary prevention of Neural Tube Defects (NTDs) and Hydrocephalus as a united global community.
NTDs affect around 500,000 live births every year. Spina bifida, the most common NTD, is the most severe birth defect compatible with life, and anencephaly is almost always fatal. Yet the majority of these birth defects is easy to prevent! In 1991, a landmark study by the Medical Research Council discovered that folic acid (vitamin B9) could reduce the risk of NTDs significantly, by up to 72%. However 25 years on, we are still only managing to prevent around 15% of the cases that we could!
25 October 2016 // Today is the 5th World Spina Bifida and Hydrocephalus Day! The aim of the World Spina Bifida and Hydrocephalus Day is to raise awareness and understanding and to advocate and promote the rights of persons with these conditions. Here is the WSBHD toolkit on how to become part of it. IF’s members have been celebrating it since 2012. Have a look at this year’s activities worldwide.