pushGlobalAlliance sq400March 3rd is World Birth Defects Day (WBDD). The PUSH! (People and Organisations United for Spina Bifida and Hydrocephalus) Global Alliance joins forces with over 70 participating organisations in promoting and increasing global awareness of birth defects, in particular neural tube defects (NTDs) and hydrocephalus. The groups are advocating for more prevention, care and research to help improve lives of all affected by these conditions.

NTDs affect about half a million pregnancies every year. The majority of these infants go on to develop Hydrocephalus. In addition to NTDs, birth defects such as Dandy Walker malformation, Chiari malformation, aqueductal stenosis, among others, make congenital Hydrocephalus even more prevalent, with an estimated 375,000 new cases of infant hydrocephalus per year in Sub-Saharan Africa alone. In the United States, hydrocephalus is the leading cause of brain surgery in children.

rdd22 February 2017 // The tenth international Rare Disease Day coordinated by EURORDIS takes place on February 28 this year. Various organisations, patients and institutions around the world will hold awareness-raising activities based on the theme of research. Research is key. It brings hope to the millions of people living with a rare condition across the world and their families. Rare Disease Day 2017 is also an opportunity to recognise the crucial role that patients play in research. You can lend your support by joining the Rare Disease Day Thunderclap campaign!

inauguration NGO Cie 90017 February 2017 // The report from the inauguration of the NGO Committee for Rare Diseases, which took place at the United Nations Headquarters in New York on 11 November 2016, is now available online. The event brought together 100 participants from patient organisations, academia, civil society, United Nations agencies and industry, as well as more than 1,600 followers via the live-stream online. The meeting marked the first time that rare diseases receive, at long last, proper consideration as a global public health priority for action within the United Nations. One of the main objectives of the event was to establish the synergies between rare diseases and the 2030 Agenda: the UN Sustainable Development Goals (SDGs). The Committee will aim to ensure that no one person living with a rare disease is left behind and in turn serves to advance efforts to achieve UN’s Sustainable Development Goals (SDGs).

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