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June 22, 2017

TOPIC: Advocacy, Featured News, Press Releases

NORD Issues Statement on the Better Care Reconciliation Act of 2017

Posted by Christina Jensen

Washington, D.C., June 22, 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 regarding the release of the Senate Leadership’s Better Care Reconciliation Act of 2017 discussion draft:

“Senate Leadership today released a discussion draft of the Better Care Reconciliation Act of 2017 (BCRA), an amended version of… Read More

June 20, 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

June 20, 2017

TOPIC: Advocacy, Events, Featured News, Get Involved

NORD Leads Rare Disease Community Days of Action Campaign to Protect Healthcare Coverage

Posted by Christina Jensen

Washington, D.C., June 20, 2017 – The National Organization for Rare Disorders (NORD), an independent nonprofit organization representing the 30 million Americans with rare diseases, has launched a nationwide campaign to urge the U.S. Senate to protect lifesaving health care for the millions of children and adults with rare diseases by opposing any legislation that would harm rare disease patients,… Read More

May 10, 2017

TOPIC: Advocacy, Featured News

NORD Issues Statement on Confirmation of New FDA Commissioner, Dr. Scott Gottlieb

Posted by Christina Jensen

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 working with Dr. Scott… Read More

May 10, 2017

TOPIC: Advocacy, Get Involved

Rare Disease Advisory Council Bill Moves through Pennsylvania House

Posted by Christina Jensen

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 bill now moves on to the Senate for consideration.

“Helping the rare disease community starts with ensuring that patients and families… Read More