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December 2, 2017

TOPIC: Advocacy, Featured News

NORD Issues Statement in Response to Senate Vote on the Orphan Drug Tax Credit

Posted at December 12, 2017 10:52 am by Christina Jensen
Washington, D.C., December 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 Senate passage of its Tax Cuts and Jobs Act:
“Today, the Senate voted to substantially diminish the Orphan Drug Tax Credit as part of its Tax Cuts and… Read More

November 30, 2017

TOPIC: Featured News, Medical

NORD Publishes Information for Physicians and Patients on Three Rare Diseases

Posted at November 11, 2017 09:56 am by Christina Jensen

Washington DC, Thursday, November 30 — The National Organization for Rare Disorders (NORD) has published new physician guides to promote diagnosis and treatment for patients with three rare medical conditions: hepatocellular carcinoma (HCC), acute myeloid leukemia (AML) and pigmented villonodular synovitis (PVNS).

NORD has also published corresponding reports on the three conditions for patients and 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 at November 11, 2017 12:00 pm 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 at November 11, 2017 11:48 am 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, Medical, Research

NORD Publishes New Educational Resource on Li-Fraumeni Syndrome

Posted at November 11, 2017 12:21 pm by Christina Jensen

Washington, D.C., November 13, 2017—As part of its ongoing series to promote awareness and education regarding rare diseases, the National Organization for Rare Disorders (NORD) has published a report on Li-Fraumeni Syndrome. This new resource is available free online to individuals around the world.

As the primary advocacy organization in the U.S. for people who have rare diseases, NORD provides… Read More