The 2020 National Report Card

We launched our recent survey to gather important data to better understand patient product use, symptoms and needs, so we have a full understanding of what it is like to live in Canada with HAE.

Data is presented at both national and international conferences to help participants understand the Canadian HAE patient population. Also, this information is required so we may continue to advocate for improved access to new, and current, safe and effective HAE treatments.

This information is needed to aide in our current Advocacy campaign to list HAEGARDA through Canadian Blood Services and to expedite access to TAKHZYRO through the many Provincial and Federal Jurisdictions. We also require this data to show a need for Canadian research for HAE with normal C1.

We need all Canadian HAE patients, and their caregivers, to please fill out this vital survey; however, you must be a member of HAE Canada to participate. If you are not a member and you are a either an adult or child/youth patient, or care for an adult or child HAE patient, please consider joining HAE Canada. After you become a member, we will send you a link to the survey. Please click here to join us.

Please fill out the survey ASAP. We need all patients, and caregivers, to complete this survey so we can gather sufficient and relevant data. We will send out reminders in the coming weeks.

All HAEC members were sent the link to the survey. If you are a member but did not receive the survey (perhaps we need your updated email address, or in the past you “unsubscribed” from HAE Canada) please send a request for the survey link to Daphne at

HAE Canada appreciates our engaged membership who complete our surveys that allow us to continue to advocate for new treatments to Canada. As a thank you, we would like to offer an added bonus for members who complete this survey. Please let your Regional Director know when you complete the survey and your name will be entered in the draw to win a travel grant to attend the next HAEi Global Conference! We don’t know where HAEi will hold their next HAE Global Conference, but we do know it’s an amazing experience that brings together the global HAE community for a positive and productive experience.