From Daphne Dumbrille, HAE Canada
As we welcome the fall season, we are pleased to share our activities of summer 2025.
An exciting development came in August when Health Canada authorized the new subcutaneous treatment, garadacimab, for use in Canada. This milestone represents a meaningful advancement for people living with HAE, providing a new treatment option that can help manage symptoms and improve quality of life. Following this authorization, in September, Canada’s Drug Agency (CDA)—the national body responsible for reviewing clinical evidence and providing recommendations on whether new treatments should be publicly reimbursed—released its Draft Recommendations for garadacimab. We were pleased to see CDA recommend reimbursement for patients with HAE types 1 and 2. However, the recommendation did not extend to patients with HAE with normal C1, leaving this group without public coverage. HAE Canada submitted detailed feedback urging CDA to reconsider this decision and ensure that all patients who could benefit from garadacimab have access. We look forward to learning the CDA’s final decision in the coming months and remain committed to advocating for equitable access for everyone in the HAE community.
In addition to treatment advocacy, the Board of Directors took an important step to strengthen our government relations and public policy efforts by partnering with a national lobbying organization. This team brings extensive experience in rare diseases and public policy, which will be invaluable as we work to address ongoing challenges in access to care. Specifically, they will help us focus on improving treatment options for nC1 HAE patients and tackling the deductible changes that accompanied the introduction of generic icatibant. Once onboarding and planning meetings are complete, we will work closely with this team to develop a comprehensive advocacy strategy aimed at making our efforts even more effective and impactful.
Education and awareness continue to be central to HAE Canada’s mission. To support our members in sharing accurate and reliable information about HAE, we provide a range of handouts and resources designed to empower patients and educate communities. Thanks to the support of the Canadian HAE Network (CHAEN), which represents physicians who treat people with HAE across the country, we are excited to release newly updated materials. These include an infographic, a tear sheet, and a brand-new HAEC brochure, all available on our website. These resources are designed to help patients and caregivers communicate confidently about HAE, raise awareness in their communities, and advocate effectively for their needs.
This summer also provided valuable opportunities for learning and global connection. In July, three HAEC Board members, Michelle Cooper, Kim Speiss and Carmen Craciun, were grateful to attend the HAEA Summit in Baltimore, Maryland. With well over 1,000 attendees, the conference offered an inspiring showcase of the power of connection, youth engagement, and family-focused programming – key elements in building a strong and supportive community. Creative vendor spaces, innovative patient services, and sessions on advocacy and patient support illustrated how vision, dedication, and teamwork can make a meaningful difference. Our Board members returned with renewed energy and insight, inspired by the ways HAEA’s commitment to advocacy and community-building truly transforms lives. Attending the Summit reinforced the importance of staying connected with international organizations and bringing new ideas and best practices back to our Canadian community.
(If you want to read more about the HAEA US Summit, you can read Global Perspectives Postcard from Baltimore on haei.org)
Three Board members, Michelle, Carmen, and Kerstyn Lane, and one staff member, Daphne Dumbrille, attended the Canadian Society of Allergy and Clinical Immunology (CSACI)’s Annual Scientific meeting in beautiful Vancouver, British Columbia. To help increase awareness among Canada’s treating physicians, HAE Canada had a booth to provide attendees with information about HAE and HAE Canada. The meeting was well attended by physicians and industry from across Canada. On Saturday, the physicians who presented at the Plenary Symposium on HAE, Drs. Susan Waserman, Paul Keith, and Marc Riedl did a fantastic job educating attendees about the latest information on HAE, with presentations focusing on management of C1 Normal HAE, new available treatments ,and updates of the new Guidelines. We are pleased to learn that Dr. Alejandro Palma from Dalhousie University in Halifax, Nova Scotia, was awarded the Canadian Allergy, Asthma and Immunology Foundation (CAAIF) – Canadian Angioedema Scholarship Program (CASP) – KalVista Research grant for HAE to explore biomarkers for clinical heterogeneity in HAE. Congratulations to Dr. Palma!
As we move into the fall, we remain committed to our mission of supporting patients, raising awareness, and advocating for equitable access to treatments. We are grateful for the dedication of our members, volunteers, partners, and Board, whose collective efforts make progress possible. Together, we will continue to stand beside our community, working to ensure that every person with HAE has the support, resources, and access to care they deserve.