Scroll
To Top

November 28, 2017

TOPIC: Advocacy, Events, Press Releases

Rare Disease Advocates Host a Save the Orphan Drug Tax Credit Rally

Posted at November 11, 2017 11:20 am by Jennifer Huron

Patients speak out as Congress moves forward with a tax bill that would negatively impact individuals with rare diseases

Washington, D.C., November 28, 2017 –  Today, the National Organization for Rare Disorders (NORD) is hosting a Save the Orphan Drug Tax Credit Rally for the rare disease community in response to the tax reform bill being debated in… Read More

November 8, 2017

TOPIC: Advocacy, Press Releases, Sticky Posts for Homepage

More Than 200 Patient Groups Call On Congress to Reinstate the Orphan Drug Tax Credit in the Tax Cuts and Jobs Act

Posted at November 11, 2017 02:48 pm by Jennifer Huron
ODTC_StickyPost_240x206_1

Washington, D.C., November 8, 2017—Today, more than 200 nonpartisan patient groups sent a letter to Congress urging policymakers to not repeal the Orphan Drug Tax Credit in the Tax Cuts and Jobs Act.

The proposed change to repeal the Orphan Drug Tax Credit would result in one-third fewer new treatments for rare diseases going forward.  Of the approximately… Read More

October 26, 2017

TOPIC: Advocacy, Featured News, Get Involved, Patient Stories, Press Releases, Sticky Posts for Advocate, Sticky Posts for Patient Organizations, Sticky Posts for Patients and Families

NORD Releases New Documentary called “Good Morning Peyton”

Posted at October 10, 2017 12:03 pm 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 at October 10, 2017 09:31 am 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, Sticky Posts for Homepage

Nominations Open!

Posted at October 10, 2017 12:17 pm by Jennifer Huron
RIA2018_StickyPost_240x206_1

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:  rarediseases.org/rare-impact-awards.

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