Canadian Association for Porphyria

Hier ist eine Auswahl von Informationen von Patienten & Fachleuten, um die Porphyrie besser verstehen zu können.

Website: http://canadianassociationf...

The mission of the Canadian Association for Porphyria/Association Canadienne de Porphyrie is:
-to promote health by providing individuals with porphyria access to related counselling, information, and group support programs.
-to create and maintain a Canadian porphyria patient registry which will centralize information, and enable the provision of specialized information and services to the porphyria population.
-to increase the medical profession’s and the public’s knowledge about porphyria through a website, seminars, presentations, educational booths, pamphlets, and information forums.