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May 10, 2017

TOPIC: Advocacy, Press Releases

Rare Disease Advisory Council Bill Moves through Pennsylvania House

Posted at May 5, 2017 04:54 pm by Jennifer Huron

Pennsylvania HB 239 establishes a Rare Disease Advisory Council and ensures rare disease patients have a voice in government

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… Read More

May 4, 2017

TOPIC: Advocacy, Press Releases

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

Posted at May 5, 2017 02:43 pm by Jennifer Huron

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 3, 2017

TOPIC: Advocacy, Press Releases

Leading Patient Advocacy Groups Remain Opposed to the American Health Care Act

Posted at May 5, 2017 05:01 pm by Jennifer Huron

May 2, 2017

TOPIC: Advocacy, Press Releases

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

Posted at May 5, 2017 03:01 pm by Jennifer Huron

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… Read More

May 1, 2017

TOPIC: Advocacy, Press Releases

NORD Issues Statement Opposing ‘MacArthur amendment’, the Latest Version of the American Health Care Act

Posted at May 5, 2017 03:49 pm by Jennifer Huron

CALL TO ACTION: Congress could vote this week – please take a minute to phone your legislators and ask them to vote no (click) 

Washington, D.C., May 1, 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… Read More