Scroll
To Top

Archives for: September 6th, 2018

NORD 35th Anniversary Blog Series: 2010-2018 (Present)

Written by Jennifer Huron on September 6, 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

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

NORD 35th Anniversary Blog Series: The Early Years (1980s)

Written by Jennifer Huron on May 7, 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 role over the years, advocating for… Read More