Rare Disease News

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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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

RareAction Network℠ Releases April State Legislative Tracker

Published April 22, 2016 by NORD

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We are making progress throughout the country for the 1 in 10 Americans with rare diseases. Here is a list of legislative initiatives that NORD and our network of advocates …

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A Special Thank You to Volunteers in the Rare Disease Community

Published April 15, 2016 by NORD

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Volunteer by definition is a person who voluntarily undertakes or expresses a willingness to undertake a service. The role of a Membership Manager at NORD is a very unique and rewarding one. …

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Advocacy Alert: Illinois Edges Closer to Establishing Rare Disease Commission

Published April 15, 2016 by NORD

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This week, the Illinois House passed HB 4576. The House Bill seeks to establish a Rare Disease Commission that would give patients – many of whom are too young or …

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Introducing the 2016 Rare Disease Day® Highlights Video

Published April 7, 2016 by NORD

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Thank you to our rare disease partners and every person who worked to heighten awareness on Rare Disease Day®. This is the one day that everyone comes together globally to …

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