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Archives for: July 12th, 2022

Take Action: Share Your Story with the White House and Help Explain Why Medical Nutrition Is Critically Important

Written by Valaree DonFrancesco on July 12, 2022

Many people with rare diseases require medical nutrition prescribed by a healthcare provider to prevent permanent disability and mortality, allow for normal growth in children and adults, or provide adequate nutritional intake. Despite medical necessity, many insurers do NOT cover medical nutrition. As a result, people with certain rare diseases and their families… Read More

NORD Announces Honorees for the 2017 Rare Impact Awards

Written by Jennifer Huron on March 15, 2017

ria_jointheconversation_dateWashington, D.C., March 15, 2017—The National Organization for Rare Disorders (NORD) today announced the people, organizations, and innovators who will be honored at the 2017 Rare Impact Awards on May 18 in Washington, D.C.

The Rare Impact Awards is a… Read More

Senate Passes Landmark 21st Century Cures Act

Written by Jennifer Huron on December 7, 2016

Senate Passes Landmark 21st Century Cures Act

us-senateWashington, D.C., December 7, 2016—Today, the United States Senate overwhelmingly approved the 21st Century Cures Act, a game-changer for medical innovation, by a bipartisan vote of 94-5. The President is expected to… Read More

NORD Ready to Address New Challenges Based on Election Results

Written by Jennifer Huron on November 14, 2016

Washington, D.C., November 14, 2016—The following statement was issued by Peter L. Saltonstall, President and CEO of the National Organization for Rare Disorders (NORD), following the results of the recent U.S. election.

“Many of us were surprised by the outcome of the presidential election last week.  The pollsters and the pundits… Read More

$1.1 Billion in Federal Funding to Fight the Zika Virus

Written by Jennifer Huron on September 29, 2016

white-houseWashington, D.C., September 29, 2016 – The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, released the following statement from President and CEO Peter L. Saltonstall following President Obama’s… Read More