Scroll
To Top

October 13, 2017

TOPIC: Events, Press Releases

Nominations Open!

Posted 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

November 20, 2017

TOPIC: Advocacy, Featured News

Statement by 91 Patient Organizations in Opposition to the House of Representatives’ Repeal of the Orphan Drug Tax Credit

Posted by Christina Jensen

Washington, D.C., November 20, 2017 – “Last week, the House of Representatives voted to repeal the Orphan Drug Tax Credit (ODTC) as part of the Tax Reform and Jobs Act (H.R.1). Our organizations, which collectively represent millions of individuals with rare diseases, are disappointed and dismayed by this harmful repeal.

The Orphan Drug Tax Credit has proven to be one… Read More

November 14, 2017

TOPIC: Advocacy, Featured News, Get Involved

Statement by 36 Patient Organizations in Opposition to Senate’s Proposed Weakening of the Orphan Drug Tax Credit

Posted by Christina Jensen

Washington, D.C., November 14, 2017 – “Today, the Senate Finance Committee continues its consideration of the Tax Cuts and Jobs Act. Our organizations, which collectively represent millions of individuals with rare diseases, stand united in opposition to the Senate Finance Committee’s proposal to substantially weaken the Orphan Drug Tax Credit (ODTC).

The Orphan Drug Tax Credit… Read More

November 13, 2017

TOPIC: Featured News

NORD Issues Statement on Nomination of Alex Azar for Secretary of the Department of Health and Human Services

Posted by Lisa Phelps
Washington, D.C., November 8, 2017 — Peter Saltonstall, President and CEO of the National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, issued the following statement today in support of Alex Azar’s nomination for Secretary of the Department of Health and Human Services (DHHS):
“DHHS is critical to the health and… Read More

November 10, 2017

TOPIC: Advocacy, Featured News, Industry, Patients & Members, Research

NORD Issues Statement in Response to Senate Finance Committee’s Proposal to Weaken the Orphan Drug Tax Credit

Posted by Christina Jensen

Washington, D.C., November 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 in response to the release of the Senate Finance Committee’s proposal to substantially weaken the Orphan Drug Tax Credit (ODTC) within its Tax Cuts and Jobs Act:

“On behalf of the 30 million… Read More

November 8, 2017

TOPIC: Advocacy, Press Releases

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

Posted 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