07 July 2014 // IF contributed to the development of the UNICEF Uganda Study on Children with Disabilities Living in Uganda: Situational Analysis of the Rights of Children with Disabilities in Uganda. Children with disabilities are one of the most marginalized and disadvantaged groups in society. Understanding their current situation by assessing the extent to which their rights are realised in Uganda, reviewing available statistical information, analysing the regulatory and institutional frameworks and mapping programmes was of paramount importance.
The study revealed a gap in addressing or meeting the needs of children with disabilities by duty-bearers and key stakeholders. The study used the example of IF's project aimed at improving quality of life for children with spina bifida and hydrocephalus in Uganda, undertaken with the lead of RHF (Norwegian Association for Spina bifida and Hydrocephalus) and the RBU (Swedish Association for Disabled Children and Youths).
From the new LATAM network for spina bifida and hydrocephalus: Genetic factors and social inclusion are fundamental worldwide!
6-7 June 2014 // During last two days Buenos Aires was filled with discussions on key topics for the Spina Bifida and Hydrocephalus (SBH) global community. Genetic factors of SBH, social inclusion, and the right to health were at the top of the agenda. Around 400 participants attended IF’s 25th International Spina Bifida & Hydrocephalus Congress: "GENErating Changes” and more than 200 people followed online. IF’s global network has been enlarged by welcoming six new organisations.
27 May 2014 // On 11 April 2014, the first Spina Bifida and Hydrocephalus Prevention and Care Partner Engagement meeting was held. It was organized by Boston Children’s Hospital, the International Federation for Spina Bifida and Hydrocephalus (IF), and CDC’s National Center on Birth Defects and Developmental Disabilities. It brought together representatives from 21 different organizations in academia, health services, private and public sectors, who came together to discuss ways to address challenges, help advance research, and strengthen and move forward prevention and care efforts in the fields of Spina Bifida and Hydrocephalus.