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What if Patients Designed Pharmacare?  

Dr. Hoskins has just launched his National Pharmacare consultation, and it is very important that all patients take part in the discussion.

To put it simplistically, the government frames the Pharmacare “problem” as “affordability” and their solutions revolve around seeking lower drug prices for Canada and limiting the drugs available to patents.

But could patients really design a better Pharmacare Program?
Of course, we can, by reframing Pharmacare around meeting individual patient needs and also delivering good value for money.  Which is why the Canadian Organization for Rare Disorders and the Consumer Advocare Network are hosting a parallel consultation to assure a patient-centred perspective is provided into the National Pharmacare discussion.

So, what should you do as a patient?

  1. Go online and join the National Pharmacare discussion.
  2. Consider participating in the regional roundtable discussions. Dr. Hoskins will be holding regional consultations in each of the capital cities across Canada and his Advisory Council will be inviting patients and patient representatives to participate. We have the opportunity to recommend patient participants. If you wish to be included, please send an email with your name, a brief statement of interest, and your affiliation (if relevant) to: info@raredisorders.ca
  3. Participate in the CORD/ADVOCARE parallel process by completing our survey and join our mailing list to hear about upcoming webinars and forums on specific “hot” Pharmacare topics.
    Survey link: https://www.surveymonkey.com/r/PatientsTalkPharmacare
If you have specific questions or comments, please feel free to contact us directly.

Durhane Wong-Rieger
President & CEO
Canadian Organization for Rare Disorders
T: 416-969-7464 / 1-877-302-7273
F: 416-969-7420

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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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Event

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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The Bayshore Foundation for Empowered Living, the charitable arm of Bayshore HealthCare, has donated $5,000 to the Canadian Organization for Rare Disorders (CORD). The donation was made in partnership with Bayshore Specialty Rx to support individuals in Canada who are affected by rare diseases.

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