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March 20, 2018

TOPIC: Advocacy, Featured News, Get Involved, Patients & Members, Press Releases

NORD Rare Action Network™ 2018 State Report Card

Posted at March 3, 2018 09:13 am by Christina Jensen
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” indicates that progress in several areas of health policy… Read More

March 7, 2018

TOPIC: Advocacy, Events, Featured News, Get Involved, Patients & Members

Another Successful Rare Disease Day®

Posted at March 3, 2018 12:23 pm by Christina Jensen

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 million Americans–or 1 in 10 of us–and millions more… Read More

March 5, 2018

TOPIC: Get Involved

35 Ways to Celebrate the 35th Anniversary of NORD

Posted at March 3, 2018 10:31 am by Jennifer Huron

This May, the National Organization for Rare Disorders (NORD) will turn 35.  This nonprofit organization is the leading advocate for patients with rare diseases.  There are 30 million Americans with rare diseases—one-tenth of the population—making it an issue that touches nearly every U.S. household in one way or another.  Here are 35 interesting ways to get involved to celebrate… Read More

January 18, 2018

TOPIC: Events, Get Involved, Medical

Early Diagnosis: Perspectives from NORD Student Chapter Leader, Harjot Randhawa

Posted at January 1, 2018 11:26 am by Christina Jensen

During the 2017 Rare Diseases & Orphan Products Breakthrough Summit over 700 individuals from the rare disease community gathered to advance the dialogue in rare diseases. NORD was pleased to have a large group of student chapter leaders involved with the event in 2017. One leader, Harjot Randhawa, was in attendance and wrote the excellent article below… Read More

January 16, 2018

TOPIC: Advocacy, Get Involved, Press Releases

NORD Launches 7,000 Mile Rare Movement

Posted at January 1, 2018 09:22 am by Laura Mullen
 THE NATIONAL ORGANIZATION FOR RARE DISORDERS (NORD) LAUNCHES 7,000 MILE RARE MOVEMENT CHALLENGING AMERICANS TO CHART 7,000 MILES DURING MONTH OF FEBRUARY
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