Rare Disease News

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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NORD Applauds Senate for Authorizing Medical Foods Coverage for the Military in National Defense Authorization Act (S.2943)

Published June 16, 2016 by NORD

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NORD, the leading, independent advocacy organization committed to helping the 1 in 10 Americans with rare diseases, applauds the Senate for authorizing medical foods coverage in the National Defense Authorization …

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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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Register for a FREE Webinar on the Undiagnosed Diseases Network (UDN)

Published May 23, 2016 by NORD

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Learn more about the Undiagnosed Diseases Network (UDN) by registering for this free webinar (June 3).

NORD Summit 2016

Published May 23, 2016 by NORD

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NORD’s Rare Diseases and Orphan Products Breakthrough Summit will be held in Arlington, VA October 17-18

NORD to Hold Rare Diseases Roundtable

Published May 12, 2016 by NORD

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The National Organization for Rare Disorders (NORD) will host a roundtable on May 17 with a wide range of stakeholders who are creating positive change across the rare disease community. …

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