To Top

November 2, 2017

TOPIC: Advocacy, Featured News, Patients & Members

NORD Issues Statement in Response to Proposed Repeal of the Orphan Drug Tax Credit (ODTC)

Posted by Christina Jensen

Washington, D.C., November 2, 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 release of the Tax Cuts and Jobs Act, and the proposed repeal of the Orphan Drug Tax Credit (ODTC):

“Today, the House Ways and Means Committee released a… Read More

October 31, 2017

TOPIC: Advocacy, Events

Join NORD & SSA in Forum on Compassionate Allowances & Rare Diseases

Posted by Lisa Phelps

NORD Board Chair Marshall Summar MD will moderate a National Disability Forum on Compassionate Allowances and Rare Diseases to be hosted by the Social Security Administration (SSA) on Tuesday, Nov. 7.

The event will provide a platform for rare disease patient advocates and medical experts to suggest diseases for consideration for SSA’s Compassionate Allowances list.

Compassionate Allowances is a way… Read More

October 26, 2017

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

NORD Releases New Documentary called “Good Morning Peyton”

Posted by Lisa Phelps

View the full documentary.

Danbury, C.T., October 26, 2017 – Imagine never being allowed to feel the sun on your skin. For 11-year-old Peyton, who is allergic to sunlight, that is a reality. In a new documentary released today, see how the National Organization for Rare Disorders (NORD) partnered with Peyton’s hometown to turn one special… Read More

October 17, 2017

TOPIC: Press Releases

New Study Examines Use and Cost of Orphan Drugs

Posted by Jennifer Huron

Orphan Drugs Account for Only 7.9% of Drug Spending in the U.S.

Washington, D.C., October 17, 2017—Orphan drugs accounted for only 7.9% of total drug sales in the U.S. in 2016, according to a study issued today by the QuintilesIMS Institute. The study, commissioned by the National Organization for Rare Disorders (NORD), analyzed the role of the… Read More

October 13, 2017

TOPIC: Events, Press Releases

Nominations Open!

Posted by Jennifer Huron

Danbury, CT and Washington, D.C., October 13, 2017—Do you know a person or company that is making a difference in the fight against rare diseases?  Submit a nomination for the 2018 Rare Impact Awards by January 12:

The Rare Impact Awards celebrates efforts to help the 30 million Americans with rare diseases who, by the very nature of their… Read More