9 November 2016 // The International Disability Alliance (IDA) invites you to join and contribute to the Stakeholder Group of Persons with Disabilities.
The rights and participation of persons with disabilities are crucial elements of the Sustainable Development Goals (SDGs). The SDGs were agreed at the United Nations in 2015, and global progress towards achieving them is reviewed each year at a meeting of governments in New York - the High-level Political Forum on Sustainable Development, or 'HLPF'. The Stakeholder Group of Persons with Disabilities is the official group that has the right to input on behalf of persons with disabilities at the HLPF. To ensure that the experiences, expertise and perspectives of persons with disabilities are heard and taken into account by governments at the 2017 HLPF, it is necessary to start preliminary thinking and preparations now. Sign up and provide information about yourself and your organisation, and indicate which of the Working Groups you would like to participate in. IDA looks forward to hearing from you. Make sure that your voice is heard!
9 November 2016 // Availability of seamless multidisciplinary model of care and support is essential for realisation of human rights and dignity of persons with spina bifida and hydrocephalus at all ages.
The Special Rapporteur on the rights of persons with disabilities, Ms. Catalina Devandas-Aguilar, is currently preparing a study, to be presented at the 34th session of the Human Rights Council in March 2017, on the provision of support to persons with disabilities. She invited stakeholders, including organizations of and for persons with disabilities, to provide information on services that are available for persons with disabilities and, for example, whether persons with disabilities are involved in the design, planning, implementation and evaluation of support services. IF used this opportunity to write a response to the consultation and point out the lack of data and expertise with regard to Spina Bifida and Hydrocephalus and the need for a multidisciplinary approach throughout the life cycle for people living with these conditions.
2 November 2016 // More research in prevention and improvements in care needed to achieve the next turning point by the global community of Spina Bifida and Hydrocephalus.
During the past three days Ghent hosted almost 300 participants of the Turning Points Conference. It was already the 27th International Conference on Spina Bifida and Hydrocephalus. The debates were very innovative, frank and sometimes emotional. One of the highlights of this weekend was the official launch by HRH Princess Astrid of Belgium of the first Global Prevention Initiative.
Several important meetings took place: IF Youth Group, IF Global Experts Panel, Working Group International Solidarity, IF EU workshop, and the workshop for SBH clinicians on multidisciplinary care, foetal surgery and European Reference networks.