Living with Rare

We want to help you at each step of the way.

We understand some of the resources are specific to disorders but many can overlap.

We also have peer support if you just need to talk to someone. Please get in touch.

Downloadable Resources:

Disability Tax Credit. If you are on a protein restricted diet including monitoring intake, measuring foods, consuming medical foods and formula there is a good chance that you will qualify for the Disability Tax Credit in Canada. Click the link to learn more.

Crédit d'impôt pour personnes handicapées. Si vous suivez un régime restreint en protéines, y compris la surveillance de l'apport, la mesure des aliments, la consommation d'aliments médicaux et de préparations pour nourrissons, il y a de fortes chances que vous soyez admissible au crédit d'impôt pour personnes handicapées au Canada. Cliquez sur le lien pour en savoir plus.

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Website Links:

Parent Road Map - We recognize that navigating the balancing act of raising a child with a rare disease, in addition to other children is difficult. We hope to help you recognize common feelings, reactions to look out for, and tips to remind your sibling children that they are seen, loved, and supported. (By Insightful Moments)

Sibling Road Map - Being a sibling of someone with a rare disease can bring up a lot of different emotions. This map was created for siblings like you to show that YOU are not alone. (By Insightful Moments)

YouTube Video Links:

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