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June 16, 2016

TOPIC: Press Releases, Advocacy

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

Posted at June 6, 2016 10:15 am by Jennifer Huron

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 Act for Fiscal Year 2017 (S.2943) on Tuesday.  The bill now must be harmonized with the House version passed last month.

“This is an important step to receive… Read More

June 15, 2016

TOPIC: Press Releases, Featured News

NORD Appoints Genetics and Metabolic Specialist Marshall L. Summar M.D. as Chairman of the Board

Posted at June 6, 2016 12:30 pm by Jennifer Huron

The National Organization for Rare Disorders (NORD), the leading, independent advocacy organization committed to helping the 1 in 10 Americans with rare diseases, has appointed Marshall L. Summar, M.D., as chairman of the board of directors. Dr…. Read More

May 12, 2016

TOPIC: Press Releases, Medical, Patients & Members, Research, Advocacy, Industry, Events

NORD to Hold Rare Diseases Roundtable

Posted at May 5, 2016 05:06 pm by Jennifer Huron

NORD_RareImpactAwards2016_Program_Page6The 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.

The roundtable will be held at the Warner Theatre in Washington, D.C., where NORD’s 2016 Rare Impact Awards are… Read More

April 28, 2016

TOPIC: Press Releases, Featured News, Medical, Patients & Members, Research, Industry

NORD and Trio Health to Provide Real-World Insights to Improve Access and Quality of Care for More Than 7,000 Rare Diseases

Posted at April 4, 2016 12:43 pm by Jennifer Huron

NORD with Trio Health partnership

WASHINGTON, D.C./BOSTON ― April 28, 2016 ―The National Organization for Rare Disorders (NORD), the country’s leading voice for the rare disease patient community, is collaborating with Trio Health to leverage its innovative platform to monitor real-world patients. This unique insight will allow physicians, drug manufacturers,… Read More