20 March 2017 // For Brain Awareness Week, which took place from March 13th – 19th, IF added its support by providing information on preventing and reducing the risks of developing Hydrocephalus. It is a disability which, if treated properly, isn't always visible. It is also a condition which is surrounded by stigma and misinformation. Parents may be told that their child is brain damaged and will be "a vegetable". Yet with proper treatment, many people with Hydrocephalus will be able to live their lives equal to others. Their brain may be working differently, they may experience specific cognitive issues, but with the right support a solution can be found.
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.