As WMers, we often talk about the challenges of getting access to new drugs, in Canada, to treat our rare diagnosis.  The next step in promoting and taking action on rare diseases needs to be done now, and CORD, the Canadian Organization for Rare Disorders (, is asking for everyone’s help.

And they have made it easy for us to make our voices be heard!

With the expected release of the Canadian Strategy for Drugs for Rare Diseases later this year including $500 million per year from the federal government, there is a once-in-a-lifetime opportunity for governments, health systems, industry, academia, health professionals and patients to work together to launch an exciting and promising new reality for Canadians with rare diseases at a time of unprecedented scientific progress and new hope.

The next critical step is coordinated action on behalf of Canadian patients.  CORD is asking our federal and provincial political leaders to support:

  1. Aligned federal and provincial rare disease strategies that ensure consistent and high levels of access to treatments for all Canadians with rare diseases
  2. Modernized regulatory processes to help accelerate access to treatments
  3. A Collaborative Canadian Network for Rare Diseases
  4. Endorsement and adoption by all provinces and the federal government of Canada’s Rare Disease Strategy (

But this message needs to be delivered to our federal and provincial politicians.  CORD is asking for our help, and the help of all Canadians.  It has provided three easy steps on the Canada4Rare web site ( to enable us to send this message:

  • An email ready-made, but easily-personalized (check the “Email tips” on the page), that can be sent to your elected representatives.  A personalized email is the most effective way of influencing your elected representatives!
  • Social media posts to share this initiative and build further momentum
  • A petition you can sign on

Go to to support and spread the word.

#Canada4Rare and #saverarelives