www.fightforourlives.ca
Dear CORD Patient Advocates,
Many thanks to the patient advocates who joined us in Ottawa for the Economic Club of Canada PMPRB forum. It really felt like this was the first time we were able to get the patient point of view out there and to have everyone understand the HUGE risk these proposed guidelines on drug pricing will have on new medicines coming to Canada. For those who were unable to attend, you can view the recording of the panel discussion HERE.
You can also find important information about the proposed guidelines and the impact on patient access to medicines in the attached fact sheet.
Our only hope to changing these proposed guidelines is the patient voice! We need you to join the “Fight For Our Lives.”
This is How.|
1) Join the “Fight For Our Lives” Patient Movement
Are new medicines essential to your life, to the lives of those you love, and to the lives of all Canadian living with serious, chronic or rare diseases? (See here for more information.)
SPEAK UP! Share your story. Don’t let politicians and policy-makers hide behind their excuses, “we didn’t know; we weren’t aware; nobody told us”. That it would be so bad.
To add your voice, please do the following:
Instagram and other accounts with either of the following text (English or French):
I’m joining #fightforourlives to ensure we get access to new medicines for — without medicines _ #cdnpoli #pmprb @PattyHajdu @JustinTrudeau
Je joins Le combat pour nos vies afin d’avoir accès aux nouveaux médicaments pour — sans médicaments #fightforourlives #cdnpoli #pmprb #cepmb @PattyHajdu @JustinTrudeau
Please fill in the blank with the name of a specific condition, type of disease (cancer) or category (rare disease). Then add your own statement about what would happen if you or someone you know or love no longer could not have access to medicines. It could be “I would be in the hospital” or “my son/daughter would lose the ability to walk or breathe on his/her own ” or “I would have to give up working or living on my own.” Please add the hashtags (#fightforourlives #cdnpoli #pmprb) and the social media handles for the Health Minister (@PattyHajdu) and Prime Minister (@JustinTrudeau) in your post.
2) Share Your Story
We want to include patient stories on the “Fight for our Lives website as well as in our submission to the PMPRB consultations on the new drug pricing guidelines.
If you are willing to have your story included, please send us your story in writing by February 12th, as the deadline for the PMPRB consultations is February 14th.
In writing your story, we’d appreciate if you could follow these parameters:
Also, we will be recording videos of patients’ stories at CORD’s conference on March 9-10th. Please let us know if you would be interested in recording a video capturing your story.
Thank you for your continued support!
Sincerely,
Durhane
Durhane Wong-Rieger
President & CEO
Canadian Organization for Rare Disorders
RARE DISEASE DAY 2024 CANADIAN ILLUMINATIONS
On February 29, 2024 these monuments will be lit up in honor of Rare Disease Day. #LightUpForRare Amherst Town Hall in Amherst Nova ScotiaBrampton Clock TowerBritish Columbia LegislatureBritish Columbia PlaceCalgary TowerEdmonton High Level BridgeEdmonton TowerFred A. Lundy bridge in Newmarket, ONMississauga City HallNanaimo BastionNiagara Falls (10:00pm – 10:15pm.) [Live cam link: https://www.earthcam.com/canada/niagarafalls/?cam=niagarafalls_str]Niagara sign in Thorold/Niagara regionOakville Town HallOlympic Cauldron Vancouver Convention CentrePeterborough City HallSales Of Light VancouverScience World Vancouver (FEB 28th)Signal Hill in St. John’s, NLThe Hamilton SignToronto CN TowerToronto Sign in Nathan Phillips SquareVaughan City HallVancouver Convention CentreThe Peace Bridge between Canada and the US Winnipeg Sign Winnipeg Bridge Let us know if there are other Canadian illuminations to add. Tag us on social media @raredisorders (Twitter/X), @raredisorders_cord (Instagram) or email us at info@raredisorders.ca with your photos of the monuments and Rare Disease Day events.
Join us and become part of an active Canadian rare disorder community. The only national organization representing all rare disorder patient groups in Canada.
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