9 November 2016 // Availability of seamless multidisciplinary model of care and support is essential for realisation of human rights and dignity of persons with spina bifida and hydrocephalus at all ages.
The Special Rapporteur on the rights of persons with disabilities, Ms. Catalina Devandas-Aguilar, is currently preparing a study, to be presented at the 34th session of the Human Rights Council in March 2017, on the provision of support to persons with disabilities. She invited stakeholders, including organizations of and for persons with disabilities, to provide information on services that are available for persons with disabilities and, for example, whether persons with disabilities are involved in the design, planning, implementation and evaluation of support services. IF used this opportunity to write a response to the consultation and point out the lack of data and expertise with regard to Spina Bifida and Hydrocephalus and the need for a multidisciplinary approach throughout the life cycle for people living with these conditions.
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!