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May 10, 2017

TOPIC: Advocacy, Press Releases

Rare Disease Advisory Council Bill Moves through Pennsylvania House

Posted by Jennifer Huron

Pennsylvania HB 239 establishes a Rare Disease Advisory Council and ensures rare disease patients have a voice in government

PITTSBURGH, Penn., May 10, 2017—Today, Pennsylvania’s House of Representatives voted unanimously to pass HB 239, which would establish a Rare Disease Advisory Council and provide Pennsylvania’s 1.2 million rare disease patients with a voice in the state government.  The… Read More

May 10, 2017

TOPIC: Featured News

NORD Statement on Confirmation of New FDA Commissioner

Posted by Lisa Phelps

Washington, D.C., May 10, 2017— The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, issued the following statement on the confirmation by the U.S. Senate of Scott Gottlieb, M.D., as Commissioner of the Food and Drug Administration (FDA):

“We at the National Organization for Rare Disorders look forward to… Read More

May 9, 2017

TOPIC: Events, Featured News, Medical

NORD Launches Free CME Program to Educate Medical Professionals about Rare Diseases

Posted by Christina Jensen

Washington, D.C., May 9, 2017—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, announces the launch of a free continuing medical education (CME) program to educate medical professionals about rare diseases.  The first event will take place on June 17 in Washington, D.C. For more information, or to… Read More

May 8, 2017

TOPIC: Advocacy, Featured News, Patients & Members

NORD and National Health Council Submit Sign-On Letter to Congress Urging the Swift Reauthorization of FDA User Fees

Posted by Christina Jensen

Washington, D.C., May 8, 2017—On Friday, the National Health Council (NHC) and the National Organization for Rare Disorders (NORD), submitted a letter from more than 120 patient advocacy organizations to members of Congress urging them to swiftly reauthorize the FDA user fees.

The letter, in part, reads, “The chronic and rare disease and disability patient communities rely on FDA to… Read More

May 4, 2017

TOPIC: Advocacy, Press Releases

NORD Issues Statement on Today’s Passage of the American Health Care Act

Posted by Jennifer Huron

Washington, D.C., May 4, 2017—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, issued the following statement in response to the passage of the American Health Care Act:

“Today the House of Representatives passed American Health Care Act (AHCA). We are very disappointed the House pursued and passed this… Read More