From Daphne Dumbrille, HAE Canada

As we move into the final months of the year, HAE Canada is pleased to share several important updates, accomplishments, and upcoming initiatives from across our community.

Saskatchewan Patient Information Update
In October, we were thrilled to bring a Patient Information Update to Saskatoon, Saskatchewan – marking the first HAEC Patient Update in Saskatchewan. Dr. Chrystyna Kalicinsky shared valuable insights on how hormones and medications can affect HAE. Michelle Cooper, HAE Canada’s President, provided an update on the latest activities and initiatives from HAE Canada, and a local HAEC member, Bob, gave an inspiring account of his personal journey living with HAE. The turnout and engagement were wonderful, and we’re grateful to everyone who joined us to learn, connect, and strengthen our community.

Attended the CORD Conference
Michelle and Daphne also participated in the Canadian Organization of Rare Disorders (CORD)’s Fall Conference titled “Co-Creating Canadian Rare”, in Ottawa in November, adding our patient voice to national conversations about rare disease policy, access, and advocacy. CORD consistently organizes interesting and informative conferences where we appreciate the opportunity to network and connect with our colleagues in the rare disease space in Canada.

Welcomed Our New Board of Directors
During our recent Annual General Meeting, our members elected the 2025–2026 Board of Directors.

  • Michelle Cooper (President)
  • Carmen Craciun (Treasurer)
  • Charbel Daniel
  • Martine Paquette
  • Kim Speiss (Vice President)
  • Kristine Thompson

We extend our heartfelt gratitude to Kerstyn Lane, who has made the decision to step down from HAE Canada’s Board of Directors. While we will miss her at the Board, we are incredibly grateful that she will continue to contribute her expertise as Chair of our Governance Committee. We want to thank Kerstyn for everything she has contributed – and continues to contribute – to the HAE Canada community. We are so grateful for her ongoing commitment, passion, and heart.

We want to warmly welcome our new directors, Kristine Thompson, who will be joining us as the Pacific Regional Director, and Charbel Daniel, who will take on the role of Atlantic Regional Director. We are incredibly fortunate to have Kristine’s paralegal training and Charbel’s experience as CEO of a not-for-profit healthcare organization in Nova Scotia. Their perspectives, skills, and passion will be invaluable to our mission, and we are genuinely appreciative that they have chosen to bring their talents to HAE Canada – we are so grateful to have them with us.

New Medical & Scientific Advisory Committee
We are pleased to announce that HAE Canada is forming a new Medical and Scientific Advisory Committee (MSAC) in collaboration with the Canadian HAE Network (CHAEN), the organization that represents physicians who treat people with HAE in Canada. This new committee, which will be made up of volunteers from both HAEC and CHAEN’s Board members, will provide trusted medical and scientific expertise in support of our mission, programs, and initiatives. MSAC will help ensure that all medical information shared by HAE Canada is accurate, evidence-based, and reflects the highest standards of patient care. CHAEN has always generously supported HAEC in many ways, and we are thrilled to solidify our partnership with the formation of this committee.

Research and Recognition: Abstracts Accepted
We are proud to share that our abstract has been accepted for presentation at the American Academy of Allergy, Asthma & Immunology (AAAAI)’s 2026 Annual Meeting in Philadelphia in February 2026. More exciting news is that for the first time, one of our abstracts has been accepted by the Canadian Drug Agency (CDA) Symposium in Ottawa in April 2026 – an important milestone that brings greater visibility of the patient’s perspective on a national level. Michelle, along with other volunteers, is looking forward to attending these conferences to present posters based on these two abstracts.

Preparing for hae day :-) 2026
Planning is already underway for our 2026 hae day :-) activities. We have begun submitting lighting-up requests and developing ideas for community walks and awareness initiatives. We encourage members across Canada to start thinking about local activities, big or small; every effort helps raise awareness and support for the HAE community.

To conclude, we would like to reflect on 2025 and look ahead to the upcoming year:

Three highlights from 2025:

  • Having a growing organization with an increase in member engagement
  • Attending our neighbors’ HAEA Summit in Baltimore, Maryland, in July
  • Having a successful Light Up campaign to celebrate hae day :-) Ten cities across Canada lit up local monuments in purple, including the CN Tower and Niagara Falls in Ontario, the Peace River Bridge in Alberta, and the Shaw Building in Charlottetown, PEI.

Our hopes for advocacy and people with HAE in Canada in 2026:

  • Easy and equal access to medication for all patients with HAE
  • Elimination of the current large co-pay for icatibant
  • Educating Emergency Department personnel about HAE to promote appropriate and timely treatment of attacks