Registration for the 2024 Walk for Immunodeficiency is now open!

NEW: Patient & Caregiver Input Survey

November 9, 2023

ImmUnity Canada has voiced the need for more choice in the types of treatments available to our community. Now, we’re seeking input from Primary Immunodeficiency (PI) patients and their caregivers, about their experiences and challenges with the disease and current treatments. If you are a caregiver, please answer the questions on behalf of the patient you support.

The information you provide will help to ensure that perspectives of the PI community are considered by decision-makers at the Canadian Agency for Drugs and Technology in Health (CADTH), who conduct reviews of new treatments and recommend whether they should be funded by government drug plans.

Your response will help inform our recommendation to CADTH for a treatment called Leniolisib. This is for a disorder called Activated Phosphoinositide 3-Kinase Delta (PI3K) Syndrome (APDS), a rare PI first discovered in 2013.

NOTE: You do not need to be an APDS patient or caregiver, have experience with Leniolisib, or live in Canada to respond to this survey.

This survey will take approximately 15-30 minutes to complete. We ask that you complete the survey by the 27th of November, 2023. The greater the response, the stronger the patient voice will be in the decision-making process for this treatment option.

Thank you for your participation!

We’re sick and tired, but we’re not alone.

ImmUnity Canada is a national charity with five provincial chapters across the country.

We empower Canadians impacted by immunodeficiency disorders to live well through education, support, advocacy, community-building, and research.

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