22 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!
17 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).
16 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.