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:
- 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
- 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
- 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.
President & CEO
Canadian Organization for Rare Disorders