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Archives for: May 14th, 2020

Living Rare, Living Stronger: NORD Patient and Family Forum 2020

Written by Valaree DonFrancesco on May 14, 2020

NORD CEO Peter L. Saltonstall has some big news to share on the city we are taking the Living Rare, Living Stronger: NORD Patient and Family Forum to in May 2020, plus the amazing venue for the Rare Impact Awards! Get ready to rock!

 

Check our site for last year’s highlights… Read More

Year-End Message from NORD’s President and CEO

Written by Lisa Sencen on December 13, 2018

For more than 35 years, NORD has been the voice of the rare disease community. Whether it’s advocating in Washington, protecting the Orphan Drug Act, working with the FDA to integrate the patient’s voice or providing assistance to those in need, NORD is the organization the rare disease community and… Read More

NORD Launches RareInsights, New Initiative to Support Data-Driven Advocacy, and Presents 5 Myths About Orphan Drugs and the Orphan Drug Act

Written by Laura Mullen on May 29, 2018

Washington, D.C., May 30, 2018—The National Organization for Rare Disorders (NORD) today launched RareInsights™, its new initiative to expand public knowledge of rare diseases and translate that knowledge into real-world solutions for patients and families, and kicked off the program with the  infographic 5… Read More

Together, we can be stronger for those that need us.

Written by Lisa Sencen on December 14, 2017
Dear Rare Disease Community Member,
Wow! What an exciting time to be involved with rare diseases. Never before has there been so much progress in diagnosing rare diseases and in the availability of new treatments! 2017 promises to be another record year in terms of new therapies becoming available for patients with rare… Read More