Canada Joins International Web Portal for Rare Disease Research

August 22, 2014

Canada is the first country in the Americas to launch an international Web portal designed to improve research and treatments for rare diseases, Health Data Management reports.

Portal Details

The international portal– called Orphanet— is led by a consortium overseen by the French National Institute of Health and Medical Research. The platform serves as an international online reference portal for data on rare diseases and contains information from:

  • Expert centers;
  • Medical laboratories;
  • Ongoing research; and
  • Patient organizations.

Canada’s Launch

The Canadian government, along with the Canadian Institutes of Health Research, worked to make the portal available in Canada.

According to Health Data Management, Canada is the first country in the Americas to connect to the data.

The Canadian health ministry said the database will give Canadians access to a specialized services directory directly and expert, peer-reviewed data on rare diseases. Officials said they plan to use the database to improve patient:

  • Diagnoses;
  • Care; and
  • Treatment (Goth, Health Data Management, 8/12).


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