Rare Disease News

Becoming a Marathon Runner

Published September 9, 2016 by NORD

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Written By: Kate Bartlett “I came across NORD’s website when I was doing research for my friend Heather Von St. James who was diagnosed with mesothelioma, 3 1/2 months after giving …

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Key Dates Approaching for NORD Summit

Published August 18, 2016 by NORD

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Researchers have the opportunity to present research to a large and diverse audience during the 2016 #NORDSummit

July 13 Day of Action: Last Chance for Zika Funding

Published July 13, 2016 by NORD

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Time is running out – today may be our last chance before September for anything to happen on the critical Zika package. This Friday, Senators will depart D.C. for their 7-week …

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Register: Rally for Medical Research Hill Day 2016, Sept. 21-22

Published June 29, 2016 by NORD

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Save the date for Sept. 21-22 for a nationwide day of action! Join NORD and 300+ partner organizations as we ‘rally’ for medical research as part of the annual Rally …

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Rare Action Network: NORD and Patient Groups in Oregon Seek to Reduce Out-of-Pocket Drug Costs for Patients

Published June 22, 2016 by NORD

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NORD has recently become a member of a coalition of patient groups in Oregon seeking to reduce out-of-pocket drug costs for patients. The Oregon legislature recently created a Prescription Drug …

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Join the Team: Running for Rare Takes on Hartford

Published June 21, 2016 by NORD

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Join us in Hartford, Conn. on October 8th! For the first time, NORD’s charity marathon team, Running for Rare, will participate in the Eversource Hartford Marathon. We are thrilled to have the team …

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Happy Father’s Day from NORD

Published June 17, 2016 by NORD

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The strength of the rare disease community is defined by the people in it, and rare dads are some of our strongest advocates. You are always there to try and …

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Today, Tell Congress We Need #CuresNow

Published June 7, 2016 by NORD

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Today, June 7, join rare disease advocates around the country and tell your Senators to support the Senate Cures Legislation. This month is the last chance for Senate Cures to pass …

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RareAction Network℠ Releases May/June State Policy Legislative Tracker

Published May 31, 2016 by NORD

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RareAction continues to make strides around the country for the 1 in 10 Americans with rare diseases. In this version of the State Policy Legislative Tracker, there is an increase …

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NORD Hosts Tweetchat with Texas Children’s Hospital on Navigating the Pediatric ER (May 26)

Published May 25, 2016 by NORD

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May 26, 2016 1:00 – 2:00 p.m. EDT A trip to the emergency room with a rare disorder can present challenges. For one, few members of the ER staff may …

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