HAE Canada encourages participation in CORD’s letter-writing campaign to endorse 3 policies critical to patients with rare disorders

Dear Rare Disease Community,

Within the context of the upcoming federal election on October 21st, and to help raise awareness of key issues for the rare disease community, CORD has developed a letter-writing campaign directed at all federal parties and candidates. The campaign, which lives on www.listentopatients.ca, invites stakeholders to send a pre-written letter/email to candidates in their riding asking them to endorse the following three policies that are critical to patients with rare disorders in Canada:

  1. Endorse and implement Canada’s rare disease strategy: We need the federal government to step up and implement those recommendations of the strategy that fall within federal responsibility
  2. Commit dedicated funds towards treatments for rare diseases: We need the federal government to implement the Budget 2019 commitment to provide $1 billion over two years starting in 2022 with dedicated annual funding to follow
  3. Revise federal drug price regulations to ensure access to treatments and clinical trials: We need the federal government to repeal the ill-conceived and potentially disastrous changes recently made to the Patented Medicines Regulations that will block patient access to new treatments and clinical trials

To participate in the campaign, please visit https://www.listentopatients.ca/, fill out the form (only requires your name, email, and postal code) and click “Take Action” to send it to your local candidates. To help maximize the impact and outreach of this campaign, we also invite you to forward this email and use social media to raise awareness of this opportunity to other RARE Supporters.


Durhane Wong-Rieger
President & CEO
Canadian Organization for Rare Disorders