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Archives for: June 15th, 2018

NORD Meets with HHS Secretary Azar to Discuss Needs of Rare Disease Patients

Written by Laura Mullen on June 15, 2018

Washington, D.C., June 15, 2018—On Wednesday, staff from the National Organization for Rare Disorders (NORD) met with Health and Human Services (HHS) Secretary Alex Azar to discuss the needs of rare disease patients. The meeting covered orphan drug innovation, growing patient involvement at the Food and Drug Administration… Read More

Letter from NORD to Majority Leader Mitch McConnell and Minority Leader Chuck Schumer in support of Alex Azar’s candidacy

Written by Laura Mullen on January 5, 2018

Washington, D.C. – January 5, 2018 – today, NORD sent the following letter to Majority Leader Mitch McConnell and Minority Leader Chuck Schumer in support of Alex Azar’s candidacy for Secretary of the Department of Health and Human Services (HHS):

 

Dear Senators,

On behalf of the National Organization for Rare Disorders (NORD), which represents the 30 million Americans with… Read More

NORD Joins 86 Organizations to Call on Congress to Protect Medicaid

Written by Jennifer Huron on March 20, 2017

Washington, D.C., March 20, 2017 – The National Organization for Rare Disorders (NORD) and 86 other organizations issued a letter today calling on Congress to take a hard look at the likely significant and life-threatening consequences of the American Health Care Act on millions of patients. The organizations represent Americans… Read More

NORD Issues Statement as House Committees Review the American Health Care Act

Written by Jennifer Huron on March 8, 2017

Washington, D.C., March 8, 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 advance of today’s hearings on the American Health Care Act:

“Monday evening, House Republicans released their long-awaited Affordable Care Act (ACA) replacement… Read More

NORD Issues Statement on Release of the American Health Care Act

Written by Jennifer Huron on March 7, 2017

Washington, D.C., March 7, 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 yesterday’s release of the American Health Care Act:

“Yesterday evening, House Republicans released the American Health Care Act, their proposed… Read More