From Michelle Cooper, President, Jacquie Badiou, Past President, and Daphne Dumbrille, COO, HAE Canada

A few years ago, HAE Canada’s Past President, Jacquie Badiou, realized that HAEC would benefit from gaining accreditation from Imagine Canada, a national organization that helps not-for-profits become and remain effective, accountable, and productive. Since then, she, along with past volunteers from the Governance Committee, Board member Kerstyn Lane, and staff member Daphne Dumbrille, have worked closely with Heather Dow from Events and Management Plus to demonstrate to Imagine Canada that HAEC fulfills the necessary requirements for accreditation, such as excellence in Board governance and financial accountability. We are extremely proud to report that our hard work has paid off and we have officially received accreditation. Special thank yous go to Heather, Kerstyn, Jacquie, Daphne, Michelle, and our treasurer, Carmen Craciun, for working diligently to achieve this goal. HAE Canada has always remained accountable to our members; and thanks to Imagine Canada’s accreditation, it’s now official.

We are excited by our latest addition to our website: Patient Stories. We hope many viewers will relate to these amazing stories highlighting how HAE patients can lead happy, fulfilling lives. Recognizing that patients with HAE often feel alone, we understand that many HAE patients have some negative feelings. We hope these stories will help alleviate these negative feelings and show that HAE patients are not alone; there are others who have similar struggles and are leading a fulfilled life. We are extremely grateful to Jordyn, Shannon, and Kim for opening their doors and hearts to share their experiences and to let others know that having a rare disease does not define who you are.

Our abstract titled “Medical resource utilization and quality of life of HAE patients based on data from the 2020 national survey” was recently accepted by the Canadian Society of Allergy and Clinical Immunology (CSACI)’s Annual Scientific meeting. Michelle, Jacquie, and Daphne are looking forward to attending CSACI’s meeting in Ottawa in October and showcasing the abstract’s data at the poster presentation. Thank you to Suzanne Kelly from Red Maple Trials for her work developing this abstract, along with fellow authors and members of the HAEC Advocacy Committee.

In March 2023, the Canadian federal government announced they plan to provide up to $1.5 billion over three years to implement the Rare Disease Drug Strategy. To better understand and keep well informed of the progress the government is making on this strategy, HAEC Board members have attended webinars and conferences hosted by the Canadian Organization for Rare Disorders (CORD) that focuses on this much anticipated strategy. We will continue to advocate for implementing this strategy and participating in CORD’s events to ensure our voices are heard.

Our Board is looking forward to some big projects coming up, specifically developing our next Five-Year Strategic Plan and designing our next National Report Card survey. We also plan to attend multiple national and international conferences to remain up-to-date in the current treatment and rare disease landscape. We are getting excited to attend the HAEi Regional Conference in Panama City in March 2024, and judging by the number of new HAE Canada members, it’s clear there is a lot of interest in this upcoming event.

We are grateful for the work our Regional Directors are doing with the HAEC members to keep everyone engaged and well-informed. Our next Patient Information Update on November 4th will take place in Winnipeg, Manitoba, and we will be offering a virtual option for members who do not live in the Winnipeg area.

HAE Canada started celebrating hae day :-) slightly early by hosting a hybrid Patient Information Update on 29 April 2023 in Edmonton, Alberta. This was our first in-person event since the start of COVID-19, and it goes without saying that we were absolutely thrilled to bring people together. Pacific Regional Director Kerstyn Lane expertly organized this event that brought in members from the area to hear about the latest news from the HAE community. Attendees enjoyed a variety of presentations, specifically from:

  • HAEi’s Anthony J. Castaldo, who discussed HAEi’s role internationally,
  • Jacquie Badiou, who introduced Michelle Cooper as the new President,
  • Michelle Cooper, who provided an update on the latest HAE Canada events and accomplishments,
  • Kerstyn Lane who kept everyone’s full attention while she generously shared her incredible patient story,
  • Dr. Bruce Ritchie, who kindly joined us remotely from his holiday in Spain, discussed HAE patient care in Edmonton and treatment options, and
  • Dr. Adil Adatia, who presented on how HAE causes swelling, how to effectively treat attacks, the role of genetic testing and current and upcoming treatments.

Daphne Dumbrille moderated the Q&A session at the end while Heather Dow worked behind the scenes on Zoom to allow members from across the country to join the meeting virtually. We were very pleased to have many in attendance on a Saturday afternoon. Thank you to our speakers for taking time out of their weekends to spend it with us. We are very lucky to have such dedicated physicians in Canada who volunteer their time to ensure patients are well-informed. At the end of the event, we encouraged everyone, both in Edmonton and across Canada, to engage in an activity and add their “steps” to the Global Activity Challenge.

Michelle, Jacquie, Kerstyn, Kim, and Daphne had the pleasure of spending 16 May 2023 with Anthony J. Casteldo and Henrik Balle-Boysen in Ottawa. All were in Ottawa to attend the Canadian Agency for Drugs and Technologies in Health (CADTH) Symposium to learn about important advocacy topics; from the importance of collecting real-world evidence (RWE) to how to accelerate access to new health technologies. It was wonderful to spend hae day :-) with Tony and Henrik – we all added our steps to earn the designated hae day :-) badge.