Canadian Association for Porphyria

Orphanet provides information about porphyria in:


Orphanet is the reference portal for information on rare diseases and orphan drugs, for all audiences. Orphanet’s aim is to help improve the diagnosis, care and treatment of patients with rare diseases.

Orphanet services

Orphanet offers a range of freely accessible services:

The organisation and governance of Orphanet

Orphanet is led by a consortium of around 40 countries, coordinated by the French INSERM team. National teams are responsible for the collection of information on expert centres, medical laboratories, ongoing research and patient organisations in their country. All Orphanet teams work according to the Orphanet Standard Operating Procedures.

The French coordinating team is responsible for the infrastructure of Orphanet, management tools, quality control, rare disease inventory, classifications and production of the encyclopaedia.

Orphanet is governed by various committees, which independently supervise the project in order to ensure its coherence, evolution and viability.

At European level
  • The Management Board is composed of Orphanet country coordinators. This committee is chaired by the director of the Inserm-Orphanet department. This board identifies funding opportunities and guides the project.
  • The Steering Committee is composed of representatives from the agencies and bodies which finance Orphanet’s core services. This committee is chaired by the director of the Inserm-Orphanet department. This committee ensures that Orphanet’s content reflects the policy, strategy or plan at the country level in the field of rare diseases.
  • The International Advisory Board is composed of experts proposed by the Management Board and nominated by the Steering committee. Board members are in charge of advising the Steering committee regarding the overall strategy of the project.
At national level
  • The National Advisory Board is composed by members nominated by the appropriate legitimate institutions which are defined at country level. The board members contribute with their expertise to Orphanet at country level.

Orphanet’s funding

The infrastructure and coordination activities are funded jointly by Inserm (the French National Institute of Health and Medical Research), the French Directorate General for Health, and the European Commission. Certain services are specifically funded by other partners. Orphanet’s national activities are financed by national institutions and/or specific contracts.

The Activity report of Orphanet

An activity report is produced annually and is published online on the Orphanet website.

    Source: This information appears on the Orphanet website 

    Last Updated: 13/Aug/2015 

    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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