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Archives for: May 20th, 2019

Deborah Skolaski: 2019 Rare Impact Award Honoree

Written by Christina Jensen on May 20, 2019

Houston native Deborah Skolaski is the loving grandmother of Cori, a seven year-old living with metachromatic leukodystrophy. MLD is a genetic disorder that affects the nerves, muscles and other organs, as well as behavior. Deborah felt helpless as she observed the struggles that her son, daughter-in-law and Cori… Read More

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

NORD Rare Action Network® 2018 State Report Card

Written by Christina Jensen on March 20, 2018
Washington, DC, March 20, 2018—A majority of states are not measuring up on legislative solutions that reduce the burden of rare diseases affecting 30 million Americans, according to a new report released today by the National Organization for Rare Disorders Rare Action Network® (NORD RAN). The 2018 “State Report Card”… Read More

Another Successful Rare Disease Day®

Written by Christina Jensen on March 7, 2018

Thank you to our rare disease partners and every person who worked to heighten awareness on Rare Disease Day® in 2018.  On this day, everyone RDD-LOGO-18-stickycomes together globally to bring attention to all 7,000 rare diseases that combined affect 30… Read More