Canadian Association for Porphyria

CAP/ACP Patient/Family Member Gathering in Toronto

  • 2018-12-08
  • 7:00 PM - 9:00 PM (EST)
  • Room 211, Li Ka Shing Research Institute (beside St. Michael’s Hospital).

Registration is closed

Patient/Family Member Gathering - Toronto

CAP/ACP President, Wendy Sauvé, will be in attendance in Ottawa to facilitate a Patient/Family Member Gathering. We plan to:

  • share the latest survey results: Access to Heme Treatment in Canada 2018 survey and the Skin-based Porphyria in Canada 2018 survey
  • discuss access to care for patients with porphyria in Canada
  • support the creation of informal patient networks across Canada. Because porphyria is a rare disease, patients and their family members rarely meet someone face-to-face who has the disorder. We are trying to support these connections.
  • discuss advocacy strategies to improve access to comprehensive care for Canadian porphyria patients.

If attendees request this, we will:

  • provide Skype access for some attendees

    This gathering is open to members of the CAP/ACP - remember that membership is free. If you have already applied to be a member, please make certain that your membership is current. Members may bring up to 2 guests. 

    If you have any questions, please contact us: 

    mailto:canadianassocforporphyria.acp@gmail.com


    Medical Disclaimer

    Care has been taken to ensure that the information on this website is accurate at the time of publication. This information is, however, intended for general guidance only and is not meant to substitute consultation from a recognized health professional. The Canadian Association for Porphyria/Association Canadienne de Porphyrie disclaims for itself and for the author of this information, all responsibility for any mis-statements or for consequences of actions taken by any person while acting on information contained herein. Physicians and patients must make their own decisions about therapy according to the individual circumstances of each case.

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