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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

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

September 26, 2017

TOPIC: Advocacy, Get Involved

Protecting Your Healthcare Coverage

Posted at September 9, 2017 10:52 am by Christina Jensen

The new administration and Congress are re-examining the United States health insurance system with the goal of repealing the Affordable Care Act, and replacing it with a new system.

Before the Affordable Care Act was enacted in 2010, rare disease patients faced discriminatory insurance practices due to their pre-existing condition. Patients were denied coverage to vital therapies and specialists, and… Read More

September 19, 2017

TOPIC: Advocacy, Featured News, Get Involved, Patients & Members, Press Releases

NORD Issues Statement Opposing the “Graham-Cassidy” ACA Replacement Plan

Posted at September 9, 2017 01:20 pm by Christina Jensen

The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, issued the following statement opposing the “Graham-Cassidy” plan to repeal and replace the Affordable Care Act (ACA):

“The Senate is currently considering a proposal put forward by Senators Graham, Cassidy, Heller, and Johnson that would repeal and replace the Affordable… Read More

August 31, 2017

TOPIC: Featured News, Get Involved, Medical, Patients & Members

Downloadable Hurricane Harvey Emergency Relief Resources

Posted at August 8, 2017 09:33 am by Christina Jensen
Hurricane Harvey has left thousands rid of their belongings and forced out of their homes. For individuals living with a rare disease, the impact of such natural disasters can be even more detrimental. Together, NORD staff worked with our Texas Rare Action Network State Ambassador, Debbie Skolaski to create the Hurricane Harvey Emergency Relief Resources packet,… Read More