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.
The year 2016 is coming to an end and we are deeply grateful to all our members, partners, donors and other supporters for your continued contributions to our work and for helping IF to achieve its mission. Only if we push together, we can achieve turning points that will improve the quality of life for people with Spina Bifida and Hydrocephalus and their families and reduce the incidence of Spina Bifida and Hydrocephalus by primary prevention. We would like to look back with you on some of our achievements this year, and forward to our plans in 2017.