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 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
At national level
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 http://www.orpha.net/consor/cgi-bin/Education_AboutOrphanet.php?lng=EN
Last Updated: 13/Aug/2015