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Archives for: March 30th, 2020

NORD and EURORDIS-Rare Diseases Europe Issue Joint Statement on COVID-19 and Orphan Drug Legislation

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

US News & World Report Features NORD and Dr. Marshall Summar in “What To Do If Your Child Is Diagnosed with a Rare Disease”

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

 

Rare Disease Day 2020 Advocacy Events Recap

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