Written by Rohan Narayanan on July 16, 2021
Last month, the National Organization for Rare Disorders (NORD) hosted their second virtual Living Rare, Living Stronger NORD Patient & Family Forum. From June 25-28, enthusiastic attendees from around the globe tuned in live for a unique weekend of inspirational stories, educational workshops, expert speakers, networking opportunities, and the… Read More
Written by Rohan Narayanan on July 15, 2021
Washington, DC – The National Organization for Rare Disorders® (NORD) was named an Official Charity Partner for the 2021 TCS New York City Marathon, taking place on November 7. This year serves as the 50th celebratory running of the marathon. NORD will be among the more than 400 official charity partners… Read More
Written by Valaree DonFrancesco on May 5, 2020
Washington, DC, May 5, 2020–Today, the National Organization for Rare Disorders (NORD®) released the findings of its recent survey on the critical issues and concerns the rare disease community is facing due to the COVID-19 pandemic. The COVID-19 Community Survey… Read More
Written by Valaree DonFrancesco on April 23, 2020
The current COVID-19 pandemic necessitates a new approach to many aspects of life—particularly those that involve gathering together. The health and well-being of people living with rare diseases, their loved ones and those working to improve their lives are always top priorities at NORD.
With that in mind, we have made… Read More
Written by Lisa Sencen on May 7, 2019
Washington, DC, May 7, 2019 – The National Organization for Rare Disorders (NORD)Ⓡ, the leading independent nonprofit organization representing the 25-30 million Americans living with rare diseases, has announced its development of key drug pricing principles, created with the needs of the rare disease community in mind.
People living with rare… Read More