NO DIAGNOSIS?

YOU DON’T HAVE A DIAGNOSIS?

Even if your illness (or your child’s) does not have a name or the diagnosis is not yet certain, you can contact our Centre iRARE.

We can explore with you if there are some possible avenues that can be taken to obtain a diagnosis in the health network or through research. It is also possible to register in some international registries where people share their information in the hope of finding someone with a similar disease or a researcher who might be interested in it.

Here's a guide to help you

To mark Zebra Month and Rare Disease Day 2022, RQMO has collaborated with the Rare Disease Foundation to translate and adapt its guide into French: “Living Without A Diagnosis”. Read the guide in French:

Living without diagnosis. Roadmap and navigation tools for families

And listen to this talk by psychologist Annie Perreault.

Coping with the challenges of diagnostic error and rare diseases

Resources for the undiagnosed

Diagnostic aid tools

Associations and support groups

Publications and media

Listen to Caroline’s story about her son, Tommy, without a diagnosis for 14 years!

Facebook Video
Caroline&Tommy
No diagnosis? Contact our iRARE Centre. We may be able to direct you to the right place in our healthcare network. We can help you register to an undiagnosed disease registry.
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