Written by Laura Mullen on March 30, 2020
The National Organization for Rare Disorders (NORD®) and EURORDIS-Rare Diseases Europe share the global concern that diagnostics, therapeutics and vaccines to address COVID-19 be developed expeditiously. NORD and EURORDIS represent the 30 million people in the US and 30 million people in the EU living with rare diseases, individuals disproportionately… Read More
Written by Laura Mullen on March 21, 2020
#NORDinthenews
NORD is featured as a rare disease resource and Dr. Marshall Summar, Chairman of NORD’s Board of Directors, is quoted extensively in an article published by US News and World Report that provides information and advice for parents dealing with a recent rare disease diagnosis for their child.
https://health.usnews.com/conditions/articles/when-your-child-has-a-rare-disease
Written by Laura Mullen on March 13, 2020
In 2009, NORD was invited to join the official Rare Disease Day campaign, led internationally by EURODIS. Since then, NORD has been the official US sponsor of Rare Disease Day, driving the annual campaign in the states, hosting advocacy events across the country and bringing the rare disease… Read More
Written by Laura Mullen on March 11, 2020
If you or someone you love is diagnosed with a rare disease, you might find yourself on a very quick learning curve about the disease (or about the lack of information on the disease, or trying to even get to an accurate diagnosis!). The number one priority for… Read More
Written by Laura Mullen on February 3, 2020
#NORDinthenews
An essay by NORD President and CEO Peter L. Saltonstall on the Orphan Drug Act is featured in Congressional Quarterly Researcher’s Conquering Rare Diseases special issue.
“Rare disease patients cannot afford to return to the early 1980s. The more than 25 million rare disease patients in the United States are counting… Read More
