Orphanet provides information about porphyria in:English Français Italiano Español Svenska Português Suoni Slovak Polska 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 servicesOrphanet offers a range of freely accessible services:
The organisation and governance of OrphanetOrphanet 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
At national level
Orphanet’s fundingThe 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 OrphanetAn activity report is produced annually and is published online on the Orphanet website. Source: This information appears on the Orphanet website http://www.orpha.net/consor/cgi-bin/Education_AboutOrphanet.php?lng=EN |
Last Updated: 13/Aug/2015
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.