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January 3, 2019

TOPIC: Featured News, Press Releases

NORD Expands and Enhances its Rare Disease Database®, a Primary Resource for Millions of People Affected by Rare Diseases

Posted by Laura Mullen

Washington, D.C., January 3, 2019 – Today, the National Organization for Rare Disorders (NORD) announced the completion of extensive additions and improvements to its Rare Disease Database, which serves as a valuable resource for patients, families and caregivers in need of easy-to-understand information about rare diseases. The enhancements to the database and to the NORD website, which… Read More

December 20, 2018

TOPIC: Advocacy

NORD Issues Statement on FDA’s Impending Expanded Access Call Center

Posted by Christina Jensen

Washington, D.C., December 20, 2018 – The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, issued the following statement on FDA’s impending expanded access call center:

“Late last week, the Food and Drug Administration (FDA) announced it will soon be launching a call center specifically for patients and… Read More

December 20, 2018

TOPIC: Advocacy, Events, Featured News, Get Involved, Rare Disease Day

Rare Disease Day 2019 is Only 10 Weeks Away!

Posted by Christina Jensen

Every year, individuals around the globe come together for one special day to recognize and raise awareness for rare diseases. This day, Rare Disease Day® (RDD), takes place on the last day of February each year. The next RDD will fall on February 28, 2019.

Together, we can raise the profile of rare diseases and the issues that our community… Read More

December 18, 2018

TOPIC: Featured News

New Study Finds Orphan Drug Exclusivity Working As Intended, On-Market Orphan Drug Prices Rise Slower than Common Drugs

Posted by Christina Jensen

Washington, D.C., December 18, 2018 — A new report commissioned by the National Organization for Rare Disorders (NORD) and published today by the IQVIA Institute, demonstrates that the seven-year market exclusivity granted to drugs designated under the Orphan Drug Act of 1983 for rare diseases is working as intended. In nearly every case, orphan exclusivity did not… Read More

December 17, 2018

TOPIC: Events, Featured News, Patients & Members

The 2019 Rare Impact Awards will take off at Space Center Houston, Saturday, June 22!

Posted by Laura Mullen

This June in Houston, Texas, the 2019 Living Rare, Living Stronger | NORD Patient & Family Forum will bring the rare community together with physicians, medical students and allied health

professionals for a program of learning, sharing and connection – in an atmosphere of support and understanding -… Read More