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Rare Disease Day 2017 Takes Place Worldwide

Today (February 28) is RareDiseaseDay 2017! Today, with events taking place in over 90 countries all around the world, it is hoped that more awareness than ever will be raised for rare diseases! With the theme of “research,” and the slogan, “With research, the possibilities are limitless,” RareDiseaseDay 2017 is an opportunity to call on all researchers, universities, students, companies, policymakers, and clinicians to do more research and to make them aware of the importance of research for the rare disease community. Rare diseases affect an estimated 25 million Americans. On Feb. 27, 2017, the National Institutes of Health hosted “Rare Disease Day at NIH” to raise awareness about rare diseases, the people they affect, and research collaborations that are making a difference. The event featured presentations, posters, exhibits, an art show, and tours of the NIH Clinical Center — a hospital at which researchers are studying more than 500 rare diseases in partnership with nearly 15,300 unique patients. Scheduled speakers at the NIH Rare Disease Day event included Rep. Leonard Lance, (R-NJ), Co-Chair of the Congressional Rare Disease Caucus; Francis S. Collins, M.D., Ph.D., Director, NIH; Christopher P. Austin, M.D., Director, NCATS, NIH; Anthony S. Fauci, M.D., Director, National Institute of Allergy and Infectious Diseases, NIH; James K. Gilman, M.D., Chief Executive Officer, NIH Clinical Center; and John I. Gallin, M.D., Associate Director for Clinical Research and Chief Scientific Officer, NIH Clinical Center. This year's Rare Disease Day video (http://www.rarediseaseday.org/videos), which has been viewed over a hundred thousand times and translated into over 30 languages, draws a parallel with a routine that many of us go through multiple times a day - searching for an answer on the internet. The video highlights how isolating it is when you search on the internet, but receive the response “your search had no results.” It also highlights the hope and promise that comes with additional research into rare diseases, something that must be continuously striven for. This year, on the tenth edition of the day, Rare Disease Day events will be held for the first time in four African nations, Botswana, Nigeria, Senegal, and Sudan. Events will also be held for the first time in Saint Pierre and Miquelon.

[Press release 1] [Press release 2] [NIH release] [Video]

[NDTV article] [International Business Times article] [Zee News article]