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.
NORD ), along with 90 other patient organizations sent letters to Health and… Read More
NORD Meets with HHS Secretary Azar to Discuss Needs of Rare Disease Patients
Written by Valaree DonFrancesco 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 Valaree DonFrancesco 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
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