Our Rares in Canada

At CanPKU+, we believe that data helps build connection and understanding across our rare disease community.

The maps below display the approximate locations of individuals and families affected by the rare metabolic disorders we support — including PKU, HCU, MSUD, UCDs, and MPS — as well as a map showing metabolic clinics across Canada.

These maps are created using Google My Maps and are based only on postal codes provided by members who have self-identified both their rare disorder and a confirmed personal diagnosis.

Please note that these maps are approximate and only as good as the information we have at hand:

• If you do not see yourself or your family represented on the map, it may mean we do not have your postal code or diagnosis recorded - or that you have moved and forgotten to update us.

• The information represents the most recent data we have available at the time of update. (28OCT2025)

To be included in the map, please visit the Manage My Profile link at the top of the page and update your information. (or email website@canpku.org with the name of the person who lives with rare and the information we should update)

Once your profile has been updated, let us know, and we will include your data in the next map refresh.

Together, these maps help illustrate the strength, reach, and diversity of our rare disease community across Canada — and the importance of continuing to connect, support, and advocate from coast to coast.