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Archives for: October 31st, 2018

NORD Creates Rare Disease Patient & Caregiver Resource Center

Written by Lisa Sencen 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 Lisa Sencen 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

NORD 35th Anniversary Blog Series: 1990s-2000s

Written by Jennifer Huron on June 25, 2018

2018 is a big year for the rare disease community – NORD is celebrating its 35th anniversary.  For the past 35 years, NORD has taken pride in being the rare disease community’s biggest advocate.  Our policy, research and other efforts have played a significant… Read More

NORD Publishes New Report on RYR-1 Related Diseases

Written by Lisa Sencen on October 5, 2017

Washington, D.C., October 5, 2017—As part of its ongoing series to promote awareness and education regarding rare diseases, the National Organization for Rare Disorders (NORD) has published a report on RYR-1-Related Diseases. This new resource is available free online to individuals around the world.

As the primary advocacy organization in the… Read More