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April 5, 2017

TOPIC: Advocacy

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

Posted 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

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

Posted 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

April 4, 2017

TOPIC: Press Releases

NORD Names New Director of Membership

Posted by Jennifer Huron

Washington, D.C., April 4, 2017—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, announces the recent hire of Debbie Drell as Director of Membership.  In her role, Debbie will be responsible for overseeing NORD’s Membership programs, which support the collective and individual needs of rare disease patient organizations,… Read More

March 31, 2017

TOPIC: Patients & Members, Press Releases, Research

International Pemphigus & Pemphigoid Foundation Launches Largest-Ever Study of Pemphigus and Pemphigoid

Posted by Jennifer Huron

 Research study is open to participants worldwide to advance understanding and treatments for rare disease causing blistering that may be accompanied by severe pain, itching, burning, and stinging.

ippf logoSacramento, CA and Washington, D.C., March 31, 2017—The International Pemphigus & Pemphigoid Foundation (IPPF), a NORD member organization, has launched… Read More

March 27, 2017

TOPIC: Press Releases, Uncategorized

NORD and Neurology Reviews Publish Special Report

Posted by Jennifer Huron

As part of its efforts to educate medical professionals about rare diseases, NORD, the leading independent nonprofit representing the 30 million Americans with rare diseases, is pleased to announce publication of the 3rd annual Rare Neurological Disease Special Report™, with Neurology Reviews®, a Frontline Medical Communications (FMC) print and digital media publication.

Published as a supplement to the… Read More