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April 5, 2017

TOPIC: Advocacy

Advocacy Alert: Tell Congress to Act Now and Pass FDA User Fee Agreements

Posted at April 4, 2017 03:58 pm by Jennifer Huron

Lawmakers are currently considering legislation to reauthorize FDA user fees. The FDA largely relies on user fees to operate and review innovative drugs, biologics, and devices.  Not only does this legislation provide critical funding for FDA to quickly review products, but the user fee agreements also provide patients and patient organizations with opportunities to participate in FDA initiatives… Read More

April 5, 2017

TOPIC: Advocacy, Sticky Posts for Homepage

NORD Rare Action Network℠ Releases Spring 2017 State Policy Legislative Tracker

Posted at April 4, 2017 10:30 am by Jennifer Huron

NORD is pleased to share the Rare Action Network’s Spring 2017 State Policy Legislative Tracker.  This document shows, state-by-state, which legislation we are tracking to help improve the lives of people and families with rare diseases.  Together, we are taking action in 42 states and the District of Columbia – up from 30 states and D.C. at the… Read More

March 24, 2017

TOPIC: Advocacy, Get Involved

Protecting Your Healthcare Coverage

Posted at March 3, 2017 12:52 pm by Christina Jensen
Healthcare Coverage

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

March 21, 2017

TOPIC: Advocacy, Press Releases

NORD and Friends of Cancer Research Issue Joint Statement In Advance of this Week’s Congressional Hearings on FDA User Fees

Posted at March 3, 2017 09:48 am by Jennifer Huron

Washington, D.C., March 21, 2017—The National Organization for Rare Disorders (NORD) and Friends of Cancer Research, two leading organizations that collectively represent millions of Americans with cancer and rare diseases, issued the following statement in advance of this week’s congressional hearings on the reauthorization of FDA user fees:

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March 20, 2017

TOPIC: Advocacy, Press Releases

NORD Joins 86 Organizations to Call on Congress to Protect Medicaid

Posted at March 3, 2017 05:45 pm by Jennifer Huron

Washington, D.C., March 20, 2017 – The National Organization for Rare Disorders (NORD) and 86 other organizations issued a letter today calling on Congress to take a hard look at the likely significant and life-threatening consequences of the American Health Care Act on millions of patients. The organizations represent Americans with complex health needs who rely on Medicaid for… Read More