9 March 2017 // The 3rd conference on European Reference Networks (ERN) kicked off in Vilnius, Lithuania. The event focused on the presentation of the 24 newly approved ERNs and brought together a wide range of stakeholders, including patient representatives. ERNs were praised as the future of European cooperation in the area of healthcare in this difficult time for the EU. All participants agreed that ERNs need to be inclusive and patient centred to provide the best possible outcomes. Presentations by selected patients representatives showed that patients were involved every step of the way during the development of their specific ERNs. Nevertheless, it was stressed by the speakers that this is just the beginning and many challenges still lay ahead.
6 March 2017 // Millions of people with disabilities face barriers in their daily life routine: withdrawing money from an ATM, entering a bank, a school, a university or any public building, using the metro, issuing a ticket, buying something online etc. Concerning this, the European Parliament is currently discussing the European Commission’s proposal for the European Accessibility Act, which was supposed to be an important advance in the improvement of the accessibility of products and services in the European Union for all citizens. However, the Committee on Internal Market and Consumer Protection (IMCO Committee), which is the responsible Committee for the European Accessibility Act in the European Parliament, published a very worrying draft report. The recent briefing is dramatically watering down the proposal for the Act, blocking a real positive impact and change in the lives of EU citizens.
World Birth Defects Day: Global Alliance calls for better prevention, care and research for Neural Tube Defects (NTDs) and Hydrocephalus
March 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.