Scroll
To Top

March 21, 2017

TOPIC: Advocacy, Press Releases

NORD and Friends of Cancer Research Issue Joint Statement In Advance of this Week’s Congressional Hearings on FDA User Fees

Posted by Jennifer Huron

Washington, D.C., March 21, 2017—The National Organization for Rare Disorders (NORD) and Friends of Cancer Research, two leading organizations that collectively represent millions of Americans with cancer and rare diseases, issued the following statement in advance of this week’s congressional hearings on the reauthorization of FDA user fees:

Read More

March 20, 2017

TOPIC: Advocacy, Press Releases

NORD Joins 86 Organizations to Call on Congress to Protect Medicaid

Posted by Jennifer Huron

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 with complex health needs who rely on Medicaid for… Read More

March 15, 2017

TOPIC: Advocacy, Press Releases

NORD Issues Statement Opposing the Preserving Employee Wellness Programs Act (H.R.1313)

Posted by Jennifer Huron

Washington, D.C., March 15, 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 opposing the Preserving Employee Wellness Programs Act (H.R.1313):

“Last week, the House Committee on Education and the Workforce voted to advance the Preserving Employee Wellness Programs Act (H.R.1313). This bill exempts employee… Read More

March 15, 2017

TOPIC: Events, Press Releases

NORD Announces Honorees for the 2017 Rare Impact Awards

Posted by Jennifer Huron

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 charity event that celebrates those who are boldly leading… Read More

March 14, 2017

TOPIC: Advocacy, Get Involved

Protecting Your Healthcare Coverage

Posted by Christina Jensen
Healthcare Coverage

The new administration and Congress are re-examining the United States health insurance system with the goal of repealing the Affordable Care Act, and replacing it with a new system.

Before the Affordable Care Act was enacted in 2010, rare disease patients faced discriminatory insurance practices due to their pre-existing condition. Patients were denied coverage to vital therapies and specialists, and… Read More