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).

wbddlogo CDC16 February 2017 // Help raise awareness for birth defects surveillance, prevention, care and research worldwide by lending your voice to raise awareness on the 3rd World Birth Defects Day (WBDD)! Sign up with your Facebook, Twitter and/or Tumblr account to the Thunderclap campaign and a one time message will be automatically posted for you on March 3, 2017. Check out the WBDD 2017 Toolkit to see what else you can do to support this important day. If you are a health care professional, speak about the steps women can take to help lower the risk of their baby developing a birth defect. Help us to reach as wide an audience as possible! Birth defects affect about 6% of infants and result in approximately 8.1 million birth defect-related disabilities every year. An estimated 303,000 newborns die during the first 28 days of life every year from birth defects.

IF YG16 February 2017 // The IF Youth Group has been renewed and we would first like to thank our previous members Dominik Drdul and Rowan Ford for their contribution. Our new members are Adrian Filip (Poland), Mirela Bukovac (Croatia) and Nele Vanhecke (Belgium). Our first meeting took place in Maastricht (Netherlands) on February 4-7th. We did many team activities, organised our future plan and participated in YO!Fest. Among our objectives are: working closer with IF, highlighting mental health issues and promoting our work throughout social media. Another core activity will be to strenght communication with different youth organisations in Europe such as Youth Groups of the European Disability Forum or European Patients Forum. Our second live meeting will be in Stockholm, Sweden. We all look forward to a successful year!

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