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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 at June 6, 2017 10:47 am 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, Events, Featured News, Get Involved, Sticky Posts for Advocate

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

Posted at June 6, 2017 12:09 pm 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 at May 5, 2017 04:15 pm 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 4, 2017

TOPIC: Advocacy, Featured News

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

Posted at May 5, 2017 04:21 pm by Christina Jensen

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

February 28, 2017

TOPIC: Featured News, Get Involved, Patient Stories, Press Releases

NORD Unveils “Do Your Share for Rare,” Year-long Campaign for Rare Disease Public Awareness

Posted at February 2, 2017 09:25 am by Jennifer Huron

DoYourShare cover photoDanbury, Conn., February 28, 2017—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, announced a year-long awareness campaign for rare disease.

Kicking off today—Rare Disease Day 2017—“Do Your Share for Rare” features the voices and stories… Read More