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July 25, 2017

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

NORD Publishes New Rare Disease Report on Retinal Vasculopathy with Cerebral Leukodystrophy (RVCL)

Posted by Christina Jensen

Washington, D.C., July 25, 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 Retinal Vasculopathy with Cerebral Leukodystrophy (RVCL). 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… Read More

July 20, 2017

TOPIC: Advocacy, Featured News, Get Involved

The BCRA and Healthcare Reform: NORD’s Latest Update

Posted by Paul Melmeyer

A note from Paul Melmeyer, NORD’s Director of Federal Policy, on where healthcare reform stands as of today and how to get involved.


As part of our “Days of Action to Protect Your Healthcare Coverage” campaign, we want to be sure that you are up-to-date on the latest news in Washington D.C.
Right now, Majority Leader McConnell and… Read More

July 20, 2017

TOPIC: Events, Featured News, Get Involved, Industry, Medical, Research

NORD Announces Keynote Speakers for 2017 Rare Diseases and Orphan Products Breakthrough Summit

Posted by Christina Jensen

Washington, D.C. July 19, 2017 – The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, has announced two keynote speakers for its 2017 Rare Diseases and Orphan Products Breakthrough Summit, to be held October 16-17 in Washington, D.C.

The meeting, which takes place on an annual basis, brings… Read More

July 18, 2017

TOPIC: Advocacy, Get Involved

Protecting Your Healthcare Coverage

Posted by Christina Jensen
daysofaction-nord-homepage-sticky

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

July 13, 2017

TOPIC: Advocacy, Featured News

NORD Issues Statement Regarding the Release of Revised Draft of the Better Care Reconciliation Act

Posted by Christina Jensen

Washington, D.C., July 13, 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 regarding the release of a revised draft of the Senate Leadership’s Better Care Reconciliation Act of 2017:

Senate Leadership today released a revised draft of the Better Care Reconciliation Act of 2017… Read More