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Category Archives: Events

HAEC Clinical Trail 2018

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HAE Canada is committed to keeping members informed about upcoming clinical research studies for HAE treatments. We are excited to let HAE Canada members know that Phase 3 prophylaxis trial for BCX7353 (APeX-2) has begun in the United States and is currently seeking Canadian participants.
The APeX-2 study is evaluating the safety and effectiveness of an investigational oral medication that may prevent hereditary angioedema (HAE) attacks. You can visit www.haeresearch.com to find important details regarding the research study.

Who is eligible?

If you (or your child) are interested in participating in this clinical research study evaluating an investigational alternative to injections or infusions to prevent HAE attacks, you might be eligible if you:

  • Have been diagnosed with HAE Type 1 or 2
  • Are 18 years old or older
    • Or are the parent or legal guardian of a child 12-17 years old diagnosed with HAE who weighs at least 40 kg or 88 lbs
  • Have HAE attacks
  • Have access to and can provide your own HAE acute treatment during the study

If you are interested in participating in this important 48 week clinical research study, we ask that you contact your Regional Director listed below:

kvisser@haecanada.org BC, AB, YT and NWT
bsimon@haecanada.org MB, SK, NU
lhowlett@haecanada.org ON
jbadiou@haecanada.org PQ
karifeere@haecanada.org NB, NS, PEI and NL

Help us tell the story of HAE in Canada!

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Hereditary Angioedema (HAE) Canada is gathering information from Canadians living with HAE to better understand what it is like to live with HAE in Canada. Data will be collected from adults 18yrs and older, caregivers of children/youth, and caregivers of adult dependents.

The information gathered will be used for research and advocacy purposes only. It is very important for HAE Canada to understand patient product use, symptoms and needs so we may continue to advocate for improved access to safe and effective therapies and treatments for Canadians living with HAE, as well as retain access to current treatments.

Adults 18yrs and older please click here to access your survey.

Caregiver of child/youth please click here to access your survey.

Caregivers of adult dependents please click here to access your survey.

Please complete the survey before August 16, 2017.
A French version of this survey will be available at a later date.

Feel free to share with friends, family and colleagues who are affected by HAE. HAE Canada thanks you for your interest in our research and for your continued support.

The HAE Canada Team

Patient Education Event – Burnaby, British Columbia

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HAE_CIPO


CIPO BC and HAE Canada invite you to

A Patient Education Event

with featured speakers

Dr. Amin Kanani,

Canadian Blood Services and expert speakers on accessing insurance and disability tax

Saturday, May 27, 2017
10:00am – 3:00pm
Registration begins at 9:00am.

The Firefighters Hall, Burnaby
Please join us for a delightful and informative day with expert speakers and networking workshops. Come, learn, and get involved!

For more information, or to register: www.cipo.ca, call 1-877-607-CIPO or email info@cipo.ca

Please mention any dietary restrictions in your RSVP.

Lunch will be at no cost thanks to the generous support of our sponsors:


Shire                                    CSL

HAE Canada Member Status Update and Questionnaire

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HAE Canada continually strives to learn about the issues and challenges HAE sufferers face, so that we can best determine how best to assist those living wth this ultra-rare disorder. To achieve this, it is important for us to keep your records updated with regards to your contact information and some general questions pertaining to you and your family living with HAE. An HAE Canada volunteer will be contacting you over the next month or so to update the valuable information required, so we may better serve our memberships’ needs. Updated information is crucial for us when lobbying for and moving forward with: Government, to secure the availability of the most current and effective treatments in Canada; education of hospital ER Departments; general awareness in reaching out to those HAE patients not yet diagnosed; etc.. Please note the information updated in this call remains confidential and the data collected will be kept completely confidential/anonymous, for HAE Canada’s use only. We would like to thank you in advance for your cooperation with assistance in updating our files, so we may better serve your needs as HAE Canada members.

Your HAE Canada Team