From President Jacquie Badiou and COO Daphne Dumbrille, HAE Canada
This fall HAE Canada hit the ground running. Our first task of the season was to present our poster titled, “Hereditary angioedema in Canada: Changes in medication use and untreated attacks between the 2017 and 2020 surveys” at the Canadian Society of Allergy and Clinical Immunology (CSACI)’s Annual 2021 Scientific Virtual Meeting. It was a great conference, and we were proud to present at this well-respected meeting.
We are thrilled that our abstract titled “HAE with normal C1-INH: Treatment and attack frequency based on data from the Canadian 2020 national survey” has been selected for a poster presentation at the American Academy of Asthma & Immunology (AAAAI)’s Annual Meeting in February 2022. We would like to once again thank Suzanne Kelly of Red Maple Trials who did a fabulous job developing this abstract. We also need to thank the HAE specialists across Canada who contributed their expertise to this abstract, as well as the HAE Canada Advocacy Committee.
Since HAE Canada is always growing, we are grateful to have the support of our volunteers. We officially welcomed new people to the HAE Canada team: Regional Director Assistants (RDAs). When we need to contact our members individually for certain projects, or to gather updated information, helpful RDAs will lend us their support. Each province has at least one RDA and we want to thank each and everyone for their commitment and assistance.
On 20 November 2021, HAE Canada hosted a Patient Information Update. We were hoping to have in-person updates in London and Sudbury, Ontario, however, COVID-19 is still preventing us from gathering. We remain grateful for the option to host virtual events, especially since this allows us to connect with members across Canada. The day stayed on task with Daphne Dumbrille and fellow panelist Michelle Cooper, the Ontario Regional Director who kept her eyes on the questions and comments. To start, the participants enjoyed two interesting and informative presentations by HAE specialists from the London area: Dr. Harold Kim, MD, FRCPC, Allergy & Clinical Immunology, and Dr. Samira Jeimy, MD, Ph.D., FRCPC, Allergy & Clinical Immunology. Dr. Kim informed us about the available treatments for Ontario HAE patients, and how specifically to access these products, and Dr. Jeimy shared her presentation titled “HAE and Pregnancy: ten things I want patients to know”. Next, Michelle Cooper kindly opened up and shared her patient journey and how she became involved with HAE Canada. Jacquie Badiou followed Michelle with a presentation asking three HAEi representatives about their early patient days and how they became involved with HAEi. These representatives included President & CEO Anthony J. Castaldo, Treasurer & Chief Regional Patient Advocate Fiona Wardman, and Executive VP & COO Henrik Balle Boysen.
We also learned about Treatments on the Horizon from Anthony J. Castaldo, and the day ended with a Question & Answer session with our already mentioned guests, plus Dr. William Yang, MD, FRCPC, FAAAAI, and Dr. Sylvain Grenier, CD, B Pharm, PharmD, FFIP, FOPQ, Director, Canadian Blood Services.
All in all, it was a wonderful event, and we are extremely grateful to all our invited guests; they were fantastic. We want to thank them immensely for taking the time to help inform Canadian HAE patients.
HAE Canada will remain busy with different projects in the next few months, for instance, the Annual General Meeting in December. We are excited to examine the excellent Real-World Evidence from our Canadian membership that has been gathered in our 2020 National Report Card survey.