Contact Us
care4rare@cheo.on.ca
Frequently Asked Questions
What is Care4Rare?
Care4Rare is a Canada-wide research consortium that consists of hundreds of clinicians (medical doctors and genetic counsellors) and researchers in many different academic fields, all focused on improving diagnostic care for patients with rare diseases.
What does Care4Rare do?
Care4Rare uses world-leading research approaches, like new data sharing tools and technologies, to figure out what DNA changes may be causing a rare disease. We also work closely with healthcare decision makers to try and move these research approaches into the healthcare system so that they can be accessed by more people.
Who does Care4Rare help?
Through our research, we hope to both contribute to the understanding of how the human body works and help decision-makers interested in introducing new technologies into the healthcare system. Our ultimate goal, however, is to help families affected with an undiagnosed rare disease. As of 2022, Care4Rare’s research program has identified thousands of diagnoses that weren’t identified through the family’s clinical testing. We expect that our publications have resulted in thousands more.
Where is Care4Rare located?
Care4Rare is a research program that is made up of a Coordinating Center (Children’s Hospital of Eastern Ontario), three Main Sub-Sites (Hospital for Sick Children, Alberta Children’s Hospital, and BC Children’s Hospital), and an additional 16 participating Clinical Sites across Canada, the full list of our sites is available in the “About Us” section.
Who can participate in Care4Rare research?
Undiagnosed patients with a suspected monogenic condition may be eligible for research.
How can I or my child participate in Care4Rare research?
Participation is on a referral basis only. To participate in Care4Rare research, families must be recommended by a collaborating health care provider (for example, medical geneticist, genetic counsellor, neurologist) at a participating site. Please discuss with your local provider if a referral to genetics is appropriate for you.
How do I work for Care4Rare?
Our career opportunities are site specific, please consult the career page of the site closest to you to check for current opportunities.
Who do I contact to feature Care4Rare in the media, my website, or in a video?
Please contact Elisabeth Soubry, esoubry@cheo.on.ca.
Careers
Job opportunities to work for Care4Rare are shared through the CHEO Research Institute Careers page.