HAE Blog

Category Archives: HAE Blog

Canadian Society of Allergy and Clinical Immunology (CSACI) Annual Scientific Meeting

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Canadian Society of Allergy and Clinical Immunology (CSACI) Annual Scientific Meeting

Three members of the HAE Canada Board of Directors, along with some helpful HAEC member volunteers, set up a booth at the Canadian Society of Allergy and Clinical Immunology (CSACI) Annual Scientific Meeting in Halifax from September 12 – 16, 2018. With representatives of Yang Medicine, they presented Abstracts based on results from the HAE Canada National Report Card survey.

The HAE Canada Derek Scott Simon Child/Youth Program.

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HAE Canada aims to raise awareness of HAE and connect those patients living with HAE. We are proud to announce the launch of The HAE Canada Derek Scott Simon Child/Youth Program.

Living with a rare disease is not easy, it can be confusing, frustrating and scary. It is even harder when you face these challenges alone. Derek, an HAE patient, wanted to create a way to connect young persons across Canada who have been diagnosed with HAE. His goal was a support system for youth all across Canada, where they could connect and communicate with others who could understand and relate to their experiences.

Sadly, Derek passed away on HAE Day, May 16, 2012 and did not get to see this goal realized. HAE Canada is proud to honour his memory in our efforts to join together Canadian youth living with HAE.

Help us tell the story of HAE in Canada! Member Action Required!

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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 caregivers of children/youth.

If you already completed the survey regarding caregivers of children/youth in August 2017, please do not fill it out again.

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.

Please contact office of HAE Canada to become a member and participate in member surveys.

This survey is open until June 4 only.

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


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 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: BC, AB, YT and NWT MB, SK, NU ON PQ NB, NS, PEI and NL

Great News!

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Your HAE Canada Team has been working hard all year and is excited to share that coming very soon is an opportunity for pediatric treatments for HAE in Canada; monoclonal antibodies (subcutaneous treatment taken every 2 weeks) and an oral (pill form) kallikrein inhibitor.
We are finally where the leading countries are for obtaining treatments.

We are also preparing for HAE with normal C1 to be included in future clinical trials in our next 5 year Strategic Plan 2019-2024. Positive times ahead for those living with HAE in Canada.

We are also extending our affiliate membership to include children and those with Idiopathic Angioedema.

We need all HAE patients in Canada to become members and fill in our surveys only, so we can complete the required patient submission and continue to lobby government for better care in the Emergency Department, obtaining speedier diagnosis, access to current treatments letting us, those living with HAE, become champions of our own care.

HAE Canada will be launching our Caregivers for Child and Youth surveys as well as French/English surveys for our Quebec HAE patients the week of April 30, 2018. You must be an HAE Canada/AOHQ member to complete the surveys and obtain information from HAE Canada on upcoming treatments and opportunities to participate in clinical trials.

Stay Tuned for clinical trials information and contacts coming to Canada! We cannot bring these treatments to Canada without the data provided from OUR surveys that you as HAE Canada members complete.

2018 HAE Global Conference Travel Grants

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We are excited to announce that the 2018 HAE Global Conference will take place May 17-20, 2018 in Vienna, Austria and applications for travel grants are now being accepted.

If you are a patient or care giver (close relative), and if you are interested in receiving a travel grant for the HAE Global Conference, you can follow this link and apply for a travel grant:

Please apply for a travel grant no later than 31 December 2017 as there are a limited number of travel grants available, applicants will be chosen by a “lottery.”

Phase 1 (from today until 31 December 2017)

Lottery results will be sent to all travel grant applicants by 3 January 2018. Those who were chosen by the lottery drawing will be invited to register for the conference and be provided with the conference registration link and a unique code to be entered during the registration process. The registration deadline is 7 January 2018. Upon registering, you will have to pay the registration fee, which will be EUR 125 per person (if you choose a shared double or triple room) and EUR 250 per person (if you choose a single room). Should you fail to register by 7 January 2018, your travel grant will be given to someone else. Anyone who was not chosen by the lottery system will be placed on a “waitlist”, and will be notified if/when travel grants become available.

Phase 2 (1 January – until 21 January 2018)

There will be a second round of registrations that runs from 1 January 2018 until 21 January 2018. Another lottery will be conducted, and the results will be communicated on 23 January 2018. Then, for lottery winners, the deadline for registration will be 28 January 2018.

Should you fail to register by 28 January 2018, your travel grant will be given to someone else.

It is EXTREMELY IMPORTANT that (1) you travel with a sufficient quantity of HAE medication to cover your needs while you are away from home, and (2) either you (or your care giver/travel companion) are able to administer your prescribed therapy.

There will be no emergency care or HAE medication available at the conference venue. Please keep in mind that you will be traveling to a foreign country with a health care system that likely is very different than in your home country. There is no guarantee that hospitals in Vienna have HAE medicines on hand to treat an attack. Also, you may be required to pay for any emergency care or hospital visit.

Neither HAEi nor any HAEi member organizations can assume liability or be expected to provide medical care if you experience problems while traveling.

Kind regards,

HAE Canada Board


HAE Canada On-Line Survey

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You may have recently received a French version of our HAE Canada Patient/Caregiver Survey. This survey is the same one that was sent to you in English a few weeks ago. Information regarding the French survey was automatically sent out to all HAE Canada members, as was the English version. If you do not speak French, or have already completed the English survey, you can disregard the email.

Aidez-nous à faire connaître l’AOH au Canada!

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Angiœdème héréditaire (AOH) Canada recueille des renseignements auprès des Canadiens atteints d’AOH afin de mieux comprendre ce que signifie que de vivre avec l’AOH au Canada. Les données proviendront d’adultes âgés de 18 ans et plus, d’aidants naturels d’enfants/adolescents/jeunes adultes ainsi que d’aidants naturels d’adultes non autonomes.

Les renseignements recueillis seront utilisés uniquement à des fins de recherche et de défense des intérêts. Il est très important pour AOH Canada de comprendre les symptômes et les besoins des patients, ainsi que leur utilisation des produits thérapeutiques, et ce, afin de continuer à promouvoir un meilleur accès à des thérapies et des traitements sûrs et efficaces pour les Canadiens aux prises avec l’AOH, tout en conservant leur accès aux traitements actuels.

Adultes âgés de 18 ans et plus : veuillez cliquer ici pour accéder à votre sondage.

Aidants naturels d’enfants/adolescents/jeunes adultes : veuillez cliquer ici pour accéder à votre sondage.

Aidants naturels d’adultes non autonomes : veuillez cliquer ici pour accéder à votre sondage.

Veuillez répondre au sondage avant le 24 Septembre

N’hésitez pas à partager ce sondage avec vos amis, les membres de votre famille et vos collègues qui sont atteints d’AOH. AOH Canada vous remercie de l’intérêt que vous portez à notre recherche ainsi que de votre appui continu.

L’équipe d’AOH Canada