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 iRARE Centre.
We can explore with you if there are some possible avenues that can be taken to obtain a diagnosis in the health system 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 is a guide to help you
The Rare Disease Foundation’s guide:
Living Without a Diagnosis. Road map and Navigation Tools for Families.
Translated in French by the RQMO:
Vivre sans diagnostic. Feuille de route et outils de navigation pour les familles
By the Rare Disease Foundation (Canada)
Resources for the undiagnosed
Diagnostic aid tools
- A tool to try to find your diagnosis: RareLook
- Tools for your doctors: see our page For professionals
Associations and support groups
- Syndromes Without a Name (SWAN) UK
- Patients and families of the Undiagnosed Network (United States)
- Discussion forum for people without a diagnosis by “Maladies Rares Info Services” (France)
- RareConnect Forum on undiagnosed diseases
Publications and media
- Helping without knowing the diagnosis (Support for caregivers)
- Maux mystères (Mystery Ailments) TV series (Canal Vie).
- Watch the episodes.
- Mystery Diagnosis TV series
- Book: The Genome Odyssey: Medical Mysteries and the Quest to Solve Them
Listen to Caroline’s story about her son, Tommy, without a diagnosis for 14 years!
Read the article: Les plus orphelines des maladies: les maladies sans nom
Listen to the conferences on the theme of the “undiagnosed” presented during our Month of Zebruary 2022. (Some conferences are in English and others have English translation).
