CORD Launches #FightForOurLives Campaign

 

The Following is a message from the Canadian Organization for Rare Disorders.

Attention Rare Disease Community: Last year, the federal government launched the National Rare Disease Drug Strategy, which included a funding commitment of $1.4 billion to help provinces and territories pay for rare disease drugs. However, one year later and not a single penny has been spent to help fund rare disease drugs. There is no sense of urgency, no goals to treat patients as soon as possible, and no timelines to roll out this funding. With one child dying with a rare disease in Canada every 18 minutes and over 3 million Canadians of all ages dealing with years before diagnosis or access to new therapies, our lives are on the line, and nothing is more urgent. This is why CORD is launching this campaign to get governments across Canada to move forward on the promised funding. The centrepiece of the campaign is an open letter that was sent to Prime Minister Trudeau, Premiers, and Canadian Health Ministers and amplified via ads in key publications and social media channels. In this context, we ask you to: – Send an email urging decision-makers to unlock the promised funding and develop provincial rare disease strategies. – Follow the conversation on social media (#FightForOurLives) and amplify our message by liking and retweeting posts from the Canadian Organization for Rare Disorders (X.com @raredisorders, Facebook @RareDisorders, Instagram @raredisorders_cord). – Copy, paste, and post this message via social media (Facebook, Instagram, X, LinkedIn, etc.): Promises don’t save lives. Actions do! @JustinTrudeau @markhollandlib 3+ million rare disease patients in Canada need government ACTION. Release the $1.4 billion and save lives NOW. Help us #FightForOurLives www.fightforourlives.ca – Join us in Ottawa on Feb. 29th for our March on Parliament Hill (contact info@raredisorders.ca, to learn more) – Tell your friends, colleagues, and others about this campaign Let’s unite as a community and show Canadian governments that our lives matter! #FightForOurLives Visit www.fightforourlives.ca to learn more.