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Archives for: January 3rd, 2019

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

Written by Laura Mullen on January 3, 2019

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… Read More

NORD Creates Rare Disease Patient & Caregiver Resource Center

Written by Christina Jensen on October 31, 2018

One of NORD most popular resources is the Rare Disease Database. In any given month, 80% of the traffic to the website goes to one of NORD’s Rare Disease Reports. Many years ago, before the Internet, these online reports were printed and mailed to patients and caregivers. Now,… Read More

Spencer and Levy-Yeboa Syndrome, the Story of Our Son

Written by Christina Jensen on June 27, 2018

NORD’s Rare Disease of the Week is Levy-Yeboa Syndrome, a very rare inherited, multi-system disorder. For more information about this disorder, you can visit the Levy-Yeboa Syndrome Rare Disease Report here. The guest blog post below was written by two parents of a child, Spencer, who passed away… Read More