23 July 2014 // In line with this year's theme of Care, EURORDIS has launched a survey to gather information about the difficulties people with rare diseases and conditions face with regard to accessing their treatment. They invite you to share your experiences, which they will use in their advocacy work and lobbying at national level. Are personal payments creating financial difficulties? Are there long waiting lists? Is the type of treatment or care you need not available close to where you live? What is the impact on your health, on your quality of life? Please take the time to fill out the EURORDIS questionnaire. It is available in 19 European languages. Thank you!
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.