Rare Disease News

Senate Passes Short-Term Agreement to Accelerate Treatments for 15 Million Sick Children with Rare Diseases

Published September 23, 2016 by NORD

Categorized in -

Unanimous vote extends the Rare Pediatric Disease Priority Review Voucher Program with important policy changes through December Washington, D.C., September 23, 2016 – On Thursday, the Senate reached an important compromise …

Continue reading “Senate Passes Short-Term Agreement to Accelerate Treatments for 15 Million Sick Children with Rare Diseases”

NORD Converges on Capitol Hill for Rally for Medical Research Hill Day to Advocate for Increased Funding for the National Institutes of Health (NIH)

Published September 22, 2016 by NORD

Categorized in -

More than 300 organizations join forces to ask Congress to provide robust, sustained, and predictable budget increases for the NIH Washington, D.C., September 22, 2016— The National Organization for Rare …

Continue reading “NORD Converges on Capitol Hill for Rally for Medical Research Hill Day to Advocate for Increased Funding for the National Institutes of Health (NIH)”

FDA Commissioner Dr. Robert Califf to Speak at NORD Summit in October

Published June 30, 2016 by NORD

Categorized in -

The Commissioner of the U.S. Food and Drug Administration, Robert Califf, M.D., will speak at NORD’s annual Rare Diseases & Orphan Products Breakthrough Summit in October. Commissioner Califf will provide …

Continue reading “FDA Commissioner Dr. Robert Califf to Speak at NORD Summit in October”

NORD Publishes Physician Guide to Mitochondrial Myopathies

Published June 28, 2016 by NORD

Categorized in -

As part of its ongoing series to promote physician awareness of rare diseases, the National Organization for Rare Disorders (NORD) has published a Physician Guide to Mitochondrial Myopathies, available free …

Continue reading “NORD Publishes Physician Guide to Mitochondrial Myopathies”

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

Published June 16, 2016 by NORD

Categorized in -

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 …

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

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

Published June 15, 2016 by NORD

Categorized in -

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 …

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

NORD to Hold Rare Diseases Roundtable

Published May 12, 2016 by NORD

Categorized in -

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. …

Continue reading “NORD to Hold Rare Diseases Roundtable”

NORD Website Reaches 1 Million Monthly Visits

Published May 6, 2016 by NORD

Categorized in -

NORD, a nonprofit dedicated to helping people with rare diseases, reached a new milestone with 1 million visits to its website (www.rarediseases.org) in the past month. “As part of our …

Continue reading “NORD Website Reaches 1 Million Monthly Visits”

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

Published April 28, 2016 by NORD

Categorized in -

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 …

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

NORD Announces 20 Rare Disease Patient Groups Selected to Develop Natural History Studies as Part of FDA Cooperative Agreement

Published April 19, 2016 by NORD

Categorized in -

Twenty rare disease patient groups have been chosen to develop natural history studies with the assistance of the National Organization for Rare Disorders (NORD) supported in part by a cooperative …

Continue reading “NORD Announces 20 Rare Disease Patient Groups Selected to Develop Natural History Studies as Part of FDA Cooperative Agreement”