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Archives for: July 26th, 2018

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

NORD Awards New Research Grants for Rare Disease Research

Written by Jennifer Huron on February 24, 2017

Washington, D.C.—February 24, 2017—The National Organization for Rare Disorders (NORD), the leading independent, nonprofit organization committed to the identification, treatment, and cure of rare disorders, has awarded seven new research grants to fund rare disease research.

Research grants awarded for 2016 Requests for Proposals include:

For the study of Alveolar Capillary… Read More