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Orphanet website Canadian entry point

Orphanet Canada
Orphanet international services
  • An inventory and classification of rare diseases
  • An encyclopaedia
  • A directory of services: clinics, laboratories, research projects, registries, clinical trials, patient organisations
  • An inventory of orphan drugs
  • Guidelines, reports
  • A newsletter
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Canadian Resources on Orphanet




Welcome to the Orphanet-Canada National Website!


This page presents the news, events and documents of national significance.



We are now on Twitter! 


Rare Disease Day 2016!


The Canadian Organization for Rare Disorders (CORD) is hosting a conference and gala from March 9-10. For more details see: 


The Children's Hospital of Eastern Ontario (CHEO) is hosting a patient-centred event for Rare Disease Day. 25 families will attend this event in addition to CHEO researchers and staff.


Petition: Put Kids Before Bureaucracy - Turn Heartbreak to Hope 

A petition was started to get health ministers in Alberta, British Columbia, Ontario and Quebec to approve genetic testing for rare diseases now. For more details, and to sign the petition, please visit this website.  

Canada's first Rare Disease Strategy was released on Parliament Hill on May 25, 2015

The Canadian Organization for Rare Disorders (CORD) helped launch Canada's Rare Disease Strategy on Monday, May 25th in Ottawa. A copy of the strategy is available on CORD's website:

March 11, 2015 - Patients at the heart of health science research - The amyotrophic lateral sclerosis (ALS) example

The CIHR Café Scientifique took place in Montreal on Wednesday, March 11, 2015, at 7:00 p.m. at the Café des Beaux-Arts

The recording of this event was be presented on Canal Savoir in May 2015.

The video is also available here.


November 17, 2014 - Canadian Rare Diseases Models and Mechanisms (RDMM) Network

The Canadian Institutes of Health Research (CIHR), in partnership with Genome Canada, has awarded the Canadian Rare Diseases Models and Mechanisms (RDMM) Network — a first of its kind collaboration —$2.3 million. The network aims to pair clinicians working with patients affected by rare diseases with research scientists to identify the genes that cause rare diseases and to better understand the molecular function of these genes. The RDMM Network, through its scientific advisory committee, will fund at least 24 catalyst projects annually.

For more information, please read the press releases from the University of British Colombia and the University of Ottawa.


November 3, 2014 - Canadian Pediatric Hospital Challenges Gene Patenting for Long QT Syndrome


The Children's Hospital of Eastern Ontario has launched a lawsuit against the U.S holders of a gene patent for long QT syndrome. For more information please visit CTV News or CBC.


The Orphanet Mobile App


The Orphanet mobile application is freely available for iPhone and iPad devices. It gives access to the main Orphanet services:  list of rare diseases with their description and associated resources; Emergency guidelines PDFs; contact details of expert centres and professionals dedicated to rare diseases in the 37 counties of the Orphanet consortium.

The application allows bookmarking of favorite pages and PDFs to find them back in one click in the “My Orphanet” section. In addition, pages can be annotated or sent by email.

The application is available in 6 languages (English, French, German, Italian, Portuguese and Spanish) and is updated every month.

To see past events, please visit our Events Archive page.

Access Orphanet services in Canada and other countries in:
Legal noticeContact us — Last updated on: 16-01-29