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Archives for: July 16th, 2020

CZI Grants to NORD and EURORDIS Support Organizational Capacity Building and Rare Disease Day Campaigns

Written by Laura Mullen on July 16, 2020

Today, the Chan Zuckerberg Initiative (CZI) announced $1.3 million in funding to support the global rare disease community through two distinct grants to NORD and EURORDIS-Rare Diseases Europe. These grants will support organizational capacity building programs and awareness campaigns for Rare Disease Day, respectively, and are part of CZI’s… Read More

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