Rare Disease News

State Report Card to Help People with Rare Diseases

Published December 13, 2016 by NORD

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Washington, D.C., December 13, 2016—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 …

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Running for Rare Named an Official Charity Partner

Published September 30, 2016 by NORD

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32nd Edition of Skechers Performance Los Angeles Marathon Set for March 19, 2017 Washington, D.C., September 30, 2016—Running for Rare was named an Official Charity Partner of the 2017 Skechers …

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Penn State Graduate Rare Disorder Survey

Published September 12, 2016 by NORD

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Please take a moment to help PSU graduate student, Kerri, make a change for the rare disease community.

Celebrating Awareness: One-Year Anniversary of Rare Disease of the Day

Published September 12, 2016 by NORD

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This summer marked our one-year anniversary of hosting the Rare Disease of the Day campaign on our Facebook page and website. It has been a productive campaign, sharing information on …

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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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Rare Disease News

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