Rare Disease Day

Dear Research Advocate, President Trump addressed a joint session of Congress on Tuesday evening. With his heartfelt recognition of Megan Crowley and Rare Disease Day, and his vision that "[achieving] cures to illnesses that have always plagued us are not too much to hope," the President demonstrated his commitment to faster medical progress. In 2013, we honored Megan’s father, John Crowley, with the Gordon and Llura Gund Leadership Award for his outstanding efforts to accelerate new treatments for Pompe disease, which afflicts Megan. Speaking for all the parents and all the patients who are waiting, we say it’s not too much to hope that we will see the President’s priority for finding...
Today, February 29, 2016, is not only a special day because it's leap day, but also because it is Rare Disease Day . Taking place on the last day of February every year, Rare Disease Day is a chance for the rare disease community to come together and raise awareness to the public and to policymakers about rare diseases and their effects on people’s lives around the world. This campaign brings together over 80 countries worldwide in the effort to find cures and advocate for more research and development, and is sponsored by the National Organization for Rare Disorders (NORD) , as well as the European Organization for Rare Disorders (EURODIS). This year's theme is “Patient Voice,” identifying...

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