12 August 2014 // World Health Organization (WHO), National Center on Birth Defects and Developmental Disabilities from the United States Centers for Disease Control and Prevention (CDC) and International Clearinghouse for Birth Defects Surveillance and Research (ICBDSR) have published tools intended to serve for the development, implementation and ongoing improvement of a congenital anomalies surveillance programme, particularly for countries with limited resources.
On 11-12 August 2014 IF is organising a workshop in Kenya on developing partnerships for managing the transition of people with spina bifida and hydrocephalus from paediatric to adult services. The overall aim is to facilitate the development of a model of service that addresses the changing healthcare needs of persons with childhood-onset disabilities as the individual grows from a child to youth, from youth to young adult, and from young adult to adult. On this occasion we developed a guide on transition from childhood to adolescence for people with Spina Bifida and Hydrocephalus in Africa.
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!