From 2017, every January the International Federation for Spina Bifida and Hydrocephalus will work with its member organisations, partners and supporters to promote World Folic Acid Awareness Week as part of the IF Global Prevention Initiative (GPI) to reduce the worldwide risk of NTDs and Hydrocephalus. We are asking for your support once again, by joining our united effort to raise awareness of this import global public health issue. From January 9th -15th we will mark the very first World Folic Acid Awareness Week.
On 15 December 2016, the European Commission announced the first 23 European Reference Networks (ERNs) for Rare Diseases. This momentous step comes after years of collaboration and efforts between rare disease patients, clinical experts and policy makers in EU Member States, at the European Commission and the European Parliament, to bring the ERNs to fruition. ITHACA, the European Reference Network on Rare Congenital Malformations and Rare Intellectual Disability is among the approved ERNs. The next round of approvals, for the second wave of the 2016 call for interest to become a ERN, should follow in February.
On December 15th 2016 Femke Bannink-Mbazzi successfully defended her PhD on 'Social Inclusion, Care and Belonging of Children with Spina Bifida: Perspectives from Uganda' at Ghent University, Faculty of Psychology and Education Sciences, research group Disability Studies and Inclusive Education. Femke has lived in Uganda since 2003, and is an independent psychologist, trainer and advisor. She works with children and adults with disabilities, mental health problems, and learning difficulties in Uganda, and has been involved in IF's programs in Uganda since 2009. Femke also was a speaker during IF's Turning Points conference, where she presented on 'Experiences of belonging of children with spina bifida in Uganda'. Her study in Uganda was partly funded by IF and Child-Help.