Rare Disease News

New Paper Addresses Health Care Costs and Patient Assistance Programs

Published April 29, 2016 by NORD

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Patient Assistance Programs: Essential Patient Access to Vital Medicines Recently, some health care analysts have broadly criticized patient assistance programs (PAPs) as a significant cause of growth in prescription drug …

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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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Running for Rare Named an Official Charity Partner of the 2016 TCS New York City Marathon Set for Sunday, November 6, 2016

Published March 15, 2016 by NORD

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Running for Rare was named an Official Charity Partner of the 2016 TCS New York City Marathon, it was announced today by the National Organization for Rare Disorders (NORD). The …

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Running for Rare Marathon Team Expands Under NORD

Published March 11, 2016 by NORD

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The Running for Rare marathon team will expand under new governance with the National Organization for Rare Disorders (NORD), the leading independent nonprofit representing all people with rare diseases and …

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NORD Founder Publishes Memoir Detailing Her Tireless Work as Parent-Advocate

Published March 2, 2016 by NORD

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“One day, I wish everyone dealing with a rare condition will have access to a treatment. I really hope you will enjoy reading these memories… and learn more about this …

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Today is Rare Disease Day®

Published February 29, 2016 by NORD

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On this day, join the 30 million Americans who are making the voice of rare diseases heard. Your participation on Rare Disease Day means more awareness and hope for 1 in …

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NORD Issues Statement on New FDA Commissioner Robert Califf, M.D.

Published February 24, 2016 by NORD

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The following statement was issued today by Peter L. Saltonstall, President and CEO of NORD, on the confirmation by the U.S. Senate of Robert Califf, M.D., as Commissioner of the …

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