Canadian Association for Porphyria

PARTNERS Consultations

  • 2015-07-15
  • 2015-07-23
  • Canada

PARTNERS Consultation Poster.pdf


PARTNERS (Patient Assisted Research Transforming National Effectiveness in Rare Diseases) is a proposed SPOR (Strategy for Patient Oriented Research) Network in Chronic Disease that has a vision of working together with Canadian rare disease patients and their families to implement a clinical care and research strategy that will improve outcomes and reduce the burden of rare disease by the year 2021. 

Canada’s strategy for patient oriented research aims to ensure that all patients receive the interventions they need when they need them. The strategy aims to collaborate and engage the patient community to assist the development of innovative diagnostic and therapeutic approaches to improve the quality, accountability and accessibility of care. 


A series of group interview sessions discussing rare disease patient, family, and caregiver experiences as well as discussing rare disease research and patient and family priorities for research will be held in communities across Canada. If you, or your family member or caregiver are interested to participate please register to attend your local session here: 


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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