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May 4, 2017

TOPIC: Advocacy

Urgent Advocacy Alert – Please Call Congress Now Before This Afternoon’s AHCA Vote

Posted by Jennifer Huron

Congress is scheduled to vote this afternoon – we need your help!

Today, the House is scheduled to vote on the American Health Care Act (AHCA). If the bill passes, the consequences could be devastating for people with rare diseases, including fewer protections for preexisting conditions and the return of annual and lifetime limits.

Please take a minute to… Read More

May 3, 2017

TOPIC: Advocacy, Press Releases

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

Posted 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 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 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

May 1, 2017

TOPIC: Advocacy, Press Releases

Leading Patient Advocacy Groups Stand Together to Oppose American Health Care Act

Posted by Jennifer Huron

WASHINGTON, D.C., May 1, 2017–On behalf of more than one hundred million Americans battling chronic and other major health conditions, the following coalition of 10 patient organizations remains united in its opposition to the American Health Care Act (AHCA):

  • American Cancer Society Cancer Action Network
  • American Diabetes Association
  • American Heart Association
  • American Lung Association
  • Cystic Fibrosis Foundation
  • JDRF
  • March of… Read More