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May 10, 2017

TOPIC: Advocacy, Get Involved

Rare Disease Advisory Council Bill Moves through Pennsylvania House

Posted by Christina Jensen

PITTSBURGH, Penn., May 10, 2017—Today, Pennsylvania’s House of Representatives voted unanimously to pass HB 239, which would establish a Rare Disease Advisory Council and provide Pennsylvania’s 1.2 million rare disease patients with a voice in the state government.  The bill now moves on to the Senate for consideration.

“Helping the rare disease community starts with ensuring that patients and families… Read More

May 4, 2017

TOPIC: Advocacy, Featured News

NORD Issues Statement on Today’s Passage of the American Health Care Act

Posted by Christina Jensen

Washington, D.C., May 4, 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 in response to the passage of the American Health Care Act:

“Today the House of Representatives passed American Health Care Act (AHCA). We are very disappointed the House pursued and passed this… Read More

May 2, 2017

TOPIC: Advocacy, Press Releases

Patient Advocacy Organizations Outline Joint Position on Expanded Access to Experimental Drugs for Seriously Ill Patients

Posted by Lisa Phelps

WASHINGTON, D.C., May 2, 2017–Seven patient advocacy organizations today laid out a joint set of principles to guide any efforts that seek to change the process of accessing unapproved therapies outside of a clinical trial, also known as compassionate use or expanded access. The patient advocacy organizations include: Alliance for Aging Research, American Cancer Society Cancer Action Network,… Read More

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