News

JOIN Patients, Families and Supporters At Parliament Hill March 10th at 12:00 pm

Hosted by Canadian Organization for Rare Disorders

The Time for Action is NOW! Draft guidelines that will severely restrict new drugs from coming to Canada were dropped by the federal government just three months ago. These guidelines will be implemented in three months WITHOUT DEBATE unless we get our voices heard by the policy makers!


What Can We Do? Make them hear us! Raise your voice on Parliament Hill on March 10th at 12:00 pm at the Centennial Flame in front of Center Block.


What Is Our Message? Canadians cannot LIVE with only cheap old drugs. Our lives and well-being require access to new life-saving and life-altering therapies. Truly amazing “wonder” drugs that can cure cancer, restore eyesight, grow new bones, or prevent bleeding are already available in some countries but may take a long time to get to Canada. Unless we roll back these guidelines.


What is the Choice? The federal government has set up a FALSE DILEMMA! To achieve drug coverage for all, the federal government has proposed as the ONLY option “universal pharmacare” made up of a list of “essential” medicines and excluding most new medicines. No other developed country is imposing this type of restriction. Canada, too, can have new drugs and a cost-effective drug system. See here for more information on this issue.


All Patients are At Risk! Patients with rare diseases, patients with recurring cancer, patients with progressive cardiovascular, neuromuscular, or inflammatory disease, and patients with neurological or mental health conditions. For many, there are drugs approved but not yet available here in Canada and not likely to be here for three to six to nine years, if the threatened new federal guidelines are implemented as proposed.

Details on the Fight for our Lives Rally
March 10th at 12:00pm

  • Where to Meet: Centennial Flame, located in front of Center Block, House of Commons on Parliament Hill (111 Wellington Street, Ottawa)
  • Date and time: March 10th at 12:00pm
  • RSVP: If you are planning to attend, please RSVP at: info@raredisorders.ca
  • Hashtag for the rally: #fightforourlives