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
The Canadian Organization for Rare Disorders Hereby Gives Notice of its Annual General Meeting: August 26, 2024 at 2:00 PM (EDT) via videoconference
CORD Annual General MeetingAugust 26, 2024 at 2:00 PM (EDT) via videoconference Dear CORD Members: The Canadian Organization for Rare Disorders gives notice of it's Annual General Meeting on August 26, 2024 at 2pm - 3pm (Eastern Time). All individual, affiliate and corporate members in good standing are invited participate. An eligible voter must be a representative of a voting member of CORD. Eligible voters may either vote at the upcoming Annual General Meeting videoconference or by proxy. Votes by proxy must be in must be returned to us by August 25, 2024. Ballots received after this date and time, duplicate votes and spoiled ballots will not be counted. To participate in the AGM teleconference, please register by August 25, 2024 Registration: https://bit.ly/4aM8IJL Once we have received your response, we will email you the teleconference details and any other necessary documents that will be required for the meeting. Thank you for your participation and if you have any questions, please let me know. Sincerely, Christine White CORD Secretary PROXY-2024Download
The Canadian Organization for Rare Disorders Hereby Gives Notice of its Annual General Meeting: August 26, 2024 at 2:00 PM (EDT) via videoconference
CORD Annual General MeetingAugust 26, 2024 at 2:00 PM (EDT) via videoconference Dear CORD Members: The Canadian Organization for Rare Disorders gives notice of it's Annual General Meeting on August 26, 2024 at 2pm - 3pm (Eastern Time). All individual, affiliate and corporate members in good standing are invited participate. An eligible voter must be a representative of a voting member of CORD. Eligible voters may either vote at the upcoming Annual General Meeting videoconference or by proxy. Votes by proxy must be in must be returned to us by August 25, 2024. Ballots received after this date and time, duplicate votes and spoiled ballots will not be counted. To participate in the AGM teleconference, please register by August 25, 2024 Registration: https://bit.ly/4aM8IJL Once we have received your response, we will email you the teleconference details and any other necessary documents that will be required for the meeting. Thank you for your participation and if you have any questions, please let me know. Sincerely, Christine White CORD Secretary PROXY-2024Download
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