10th European Conference on Rare Diseases & Orphan Products (ECRD 2020)
Written by Valaree DonFrancesco on May 14, 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
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
NORD Issues a Rare Decree: Show Your Stripes™ for Rare Disease Day®!
Written by Laura Mullen on January 16, 2020
Washington, DC, January 16, 2020–The National Organization for Rare Disorders (NORD®), the leading independent nonprofit organization representing over 25 million Americans living with rare diseases, is issuing a Rare Disease Day decree: Show Your Stripes! This campaign takes its cue from the majestic zebra, known for its distinctive stripes…. Read More
Rare Disease Day 2019 Notes and Successes
Written by Lisa Sencen on March 6, 2019
This year, NORD launched the #ShowYourStripes awareness campaign in time for Rare Disease Day (RDD) with a goal of increasing attention on rare diseases and engaging our community. Judging by the number of events, attendance at events, extensive media coverage, robust social media engagement and beyond, NORD is very proud… Read More