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Archives for: June 25th, 2018

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

Last Rare Disease Day Event of 2018 a Success in Pennsylania

Written by Laura Mullen on June 20, 2018

*The following article ran 6/19/2018 via Pennsylvania Legislative Services, an online legislative research, tracking, media, and analysis service providing access to Pennsylvania’s policy making process.

SUPPORTERS, LAWMAKERS CELEBRATE RARE DISEASE AWARENESS DAY

By Derek Snyder, Pennsylvania Legislative Services | June 19, 2018

Dozens of advocates joined… 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

NORD Rare Disease Day Tweetchat

Written by Christina Jensen on February 28, 2018
In celebration of Rare Disease Day 2018, NORD will moderate a tweetchat on the important topic “What To Do If You or Your Child Receive a Rare Disease Diagnosis” with co-hosts Boston Children’s Hospital and The Mighty.
Join us! The tweetchat is an opportunity for patients, experts, doctors, the rare disease community… Read More