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September 19, 2017

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

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

Posted 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

September 14, 2017

TOPIC: Advocacy

Nearly 140 Patient Organizations Support the Orphan Drug Tax Credit

Posted by Christina Jensen

Today, NORD joined nearly 140 patient organizations in sending a letter to Congress in support of the Orphan Drug Tax Credit (ODTC). We are extremely grateful to all those organizations that joined us and lent their support. It is vital that the Orphan Drug Tax Credit remains in place, and the rare disease patient community will continue to fight… Read More

September 12, 2017

TOPIC: Featured News, Medical, Patients & Members, Press Releases

NORD Publishes New Rare Disease Report on Shprintzen Goldberg Syndrome (SGS)

Posted by Christina Jensen

Washington, D.C., September 15, 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 Shprintzen Goldberg Syndrome (SGS). 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,… Read More

August 31, 2017

TOPIC: Events, Featured News, Industry, Medical, Patients & Members, Research

FDA Announces First Gene Therapy in U.S.

Posted by Mary Dunkle

In an action the rare disease community has been eagerly awaiting, the Food and Drug Administration (FDA) has announced the first-ever approval of a gene therapy in the U.S. The product is Kymriah, and it is approved to treat certain children and young adults who have a cancer of blood and bone marrow known as acute lymphoblastic leukemia (ALL).

Approximately… Read More

August 31, 2017

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

Downloadable Hurricane Harvey Emergency Relief Resources

Posted 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