28 May 2015 // Over 60 patient representatives from 30 countries were gathered in Madrid, Spain at the EURORDIS Membership Meeting Madrid 2015. During the meeting the inauguration of Rare Diseases International (RDI) took place and a joint declaration was adopted to advocate for rare diseases as an international public health priority. RDI represents patients and families of all nationalities across all rare diseases. It will be the voice of all people living with a rare disease around the world today and will work to give visibility to rare diseases in the global health agenda. IF is a full member of EURORDIS since 2013 and will now apply for RDI membership. IF fully supports the principles of the joint declaration, which includes prevention and the right to health, two of IF's strategic objectives.
27 May 2015 // Launched in September 2010 by the UN Secretary-General, the Global Strategy for Women’s and Children’s Health has contributed to significant progress worldwide for women’s and children’s survival and health. An updated Global Strategy for Women’s, Children’s, and Adolescents’ Health will build on new evidence, including the need to focus on critical population groups such as newborns, adolescents and those living in fragile and conflict settings, build the resilience of health systems, improve the quality of health services and equity in their coverage, and work with health-enhancing sectors on issues such as women’s empowerment, education, nutrition, water, sanitation and hygiene.
Brussels 21 May 2015 // In its resolution on the UN Convention on the Rights of Persons with Disabilities, adopted yesterday, the European Parliament calls for more measures to ensure that citizens with disabilities enjoy their right to free movement between the Member States on an equal footing with others. The International Federation for Spina Bifida and Hydrocephalus (IF) stresses that the EU obligations under the Convention (ratified by the EU in 2010) will not be complete until all children and adults with disabilities enjoy the right to cross-border healthcare without discrimination on the basis of disability.