23 April 2015 // On Saturday March 28, 2015, IF's Global Experts Panel held its second meeting, kindly hosted by Boston Children's Hospital. The aim of the meeting was to get better acquainted with each other's work, learn about IF and its Strategic Plan, and to establish a workplan. The panel also discussed the latest developments in the fields of Spina Bifida and Hydrocephalus treatment and in the area of prevention. Anne Molloy and Richard Finnell wrote a proposal to help the Bo Hjelt Foundation for Spina Bifida set research priorities with regard to the causes of Spina Bifida for the next 3 years. In 2015, the GEP will look into the possibilities of writing and publishing a Lancet Seminar or white paper on Spina Bifida. All panel members will be contributing to IF's next conference, eQuality, taking place in Italy, October 16-18, 2015, and the GEP will have its next meeting there.
31 March 2015 // International Federation for Spina Bifida and Hydrocephalus, in consultation with the members and experts, made a submission to the UN Committee on the Rights of the Child in view of its ongoing work to draft a General Comment on the Rights of Adolescents. In its submission, IF focused on the rights of adolescents with spina bifida and hydrocephalus during the sensitive stage of transition from childhood to adulthood. The submission covers the need for a multidisciplinary approach to transition, which includes high level of appropriate healthcare services, social and educational support as well as the importance of informal peer support. These elements are essential for fostering the young person's growing maturity and preparing her or him for an independent life in the community and the responsible self-management of health needs for the best attainable standard of health.
20 March 2015 // The EDF Alternative Report has been prepared in the frame of the review process of the EU by the UN Committee in Geneva. During its 13th session on 2 April 2015, the UN Committee will examine for the first time the report that the EU has submitted describing the work it has done to put in practice the principles of the UN CRPD since its ratification in 2010. The EDF report based its analysis on the gaps in the EU Report on the Implementation of the UN CRPD that the EU submitted to the UN Committee on 5 June 2014 and seeks to complement it where relevant with information received by EDF members and other stakeholders. IF contributed to Article 25 on Health and among other issues pointed out the shortcomings of the Cross-border Healthcare Directive.