We’re pleased to announce that the Canadian Association of Pompe is now listed on Orphanet.
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 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.
For more information about Orphanet, click here.