From Daphne Dumbrille, HAE Canada

This spring has been an inspiring season of connection, learning, and advocacy for HAE Canada and our community. From strategic planning sessions to national conferences, local gatherings, and the Global Activity Challenge, here’s a look at the meaningful moments that shaped the last few months.

Board Retreat: Setting the Stage for a Purposeful Year
Our annual board retreat took place in Ottawa, where board members and volunteers came together in person and virtually to align on projects rooted in our strategic plan. The energy was high as we brainstormed, built stronger relationships, and mapped out activities for the year ahead. The retreat was both productive and motivating, reinforcing our shared commitment to the HAE community.

Patient Information Update in Timmins, ON
On April 5th, Michelle Cooper (HAEC President), Daphne Dumbrille (COO), and our trusty consultant, Heather Dow (Event’s Management Plus), travelled to Timmins, Ontario, to host a hybrid Patient Information Update. Dr William Yang (MD, FRCPC, FAAAAI), along with two members of his clinical team, Stephanie Santucci (RN) and Hazelyn Torres (RPN), joined us virtually from Ottawa to present on the latest HAE treatments and ongoing clinical trials. Attendees benefited from a dynamic Q&A session, gaining valuable insights directly from medical professionals. After the Q&A, we switched gears, and Anne Morin joined us at the podium to tell her inspiring journey as a person with HAE living in northern Ontario. The event also featured Anna Taneburgo (B.S.W.), a fantastic therapist who spoke on self-care and stress management for those living with a genetic condition. She closed her session with a calming guided meditation—an experience that left everyone feeling recharged. Thank you to each of our presenters and to everyone who attended, both virtually and in person. It’s always a highlight to meet new people and see familiar faces at our Patient Updates.

CORD’s Rare Disease Day Spring Conference
From April 29–30, HAE Canada staff member Daphne Dumbrille and a volunteer attended the Canadian Organization for Rare Disorders (CORD)’s Rare Disease Day conference in Calgary. Under the theme “Reimagining Rare: Optimizing the Patient Journey from Diagnosis to Treatment,” the event brought together patients, healthcare professionals, and industry leaders. Together, they explored how federal investments can most effectively support Canadians living with rare diseases. It was an important reminder of the power of collaboration in driving change.

HAEi Global Activity Challenge: Canada Steps Up!
We’re thrilled to share that Canada placed third out of 43 countries in the HAEi Global HAE Activity Challenge for total step count (as of June 3rd, clocking in at 12,619,567 steps), behind first-place United States and second-place Denmark. Congrats to both those countries for your amazing job! We are also very proud of our second-place finish in two other categories: the number of activities (883) and the number of participants (1,469 people contributed to Canada’s totals)! From April 1 to May 31, our passionate members, along with friends and family, showed up in full force.

To mark hae day :-) on May 16th, our fabulous HAE Canada volunteers reached out to their local municipalities to request monuments and city signs to light up purple. In the end, ten cities across Canada lit up in purple, including two major landmarks in Ontario: the CN Tower and Niagara Falls. What a powerful show of solidarity! We want to thank all our volunteers who dedicated their time to getting as many cities as possible to recognize hae day :-). We have already started planning how we will increase the number of purple lights next year.

Patient’s Stories: Raising Awareness Through Video and a Blog
A few years ago, four HAEC members generously agreed to step forward and share their experiences as a person with HAE living in Canada. Recently, we added two more stories to our website. We’re honoured to share a moving video created by the Daniel family about their young son’s journey with HAE. Created entirely by Charbel, Rebecca, and their son Lucas, the video shines a light on a condition too few people know about and helps foster understanding. Another recent addition to our page comes from Stacy and Amanda (The Unedited Sisters). With help from their family members, they have written a very impactful and meaningful blog about living as a person with HAE with normal C1 in Canada.

We want to extend a HUGE thank you to the Daniel family and Stacy and Amanda’s family for their enthusiasm and creativity in raising awareness and helping others connect with the lived HAE experience.

Please visit our website’s Patient Stories page to watch Lucas’s video and read Stacy and Amanda’s blog post.

ED Poster Initiative: A Practical Tool for Emergency Situations
People with HAE often face significant challenges when presenting to Emergency Departments (ED). To help address this, HAE Canada – using HAEi’s template and with support from the Canadian HAE Network (CHAEN) – has developed a Canadian-specific ED poster. Designed to be brought by people with HAE to their local hospitals, the poster informs clinicians about HAE and supports faster, more accurate diagnoses during emergencies. If just one person is diagnosed because a physician recognizes their symptoms from this poster, we’ll consider it a huge success. A heartfelt thank you to HAEi and CHAEN for their support in making this project a reality.

Submission to CDA re: Patient Group Participation
To help influence how patient perspectives are included in the drug reimbursement review process, HAE Canada responded to Canada’s Drug Agency (CDA-AMC)’s request for feedback on improving the process for evolving patient group input submissions. This consultation marked the first in a series of initiatives focused on enhancing the role and impact of patient group contributions in these critical reviews.

Attending EAACI’s 2025 Annual Congress
From June 13 to 16, Michelle and Daphne were in Glasgow, Scotland, to attend the 2025 European Academy of Allergy and Clinical Immunology (EAACI) Annual Congress.

The event was a huge success, with many sessions dedicated to HAE. It was particularly encouraging to see numerous research posters addressing a broad range of topics, such as the burden of disease and patient preference in HAE and the impact on quality of life, disease management, and sleep health.

Michelle delivered an excellent presentation of HAE Canada’s poster titled ‘Quality of life and measures of well-being of Canadian patients with HAE C1-INH based on data from the 2020 and 2024 national surveys,’ and we thank her for representing the organization so well.

We were also pleased to see all of our sponsors represented with exhibitor booths (Astria, BioCryst, CSL Behring, KalVista, Pharvaris, and Takeda), providing attendees with valuable information about current and emerging HAE treatments. It was a privilege to meet and engage with the European representatives from each of our sponsoring organizations. We also had the opportunity to meet with Angela Metcalfe, CEO of HAEUK. We always appreciate meeting with other organizations to learn and connect.

Letter Writing Campaign: Equal Access to icatibant
In a previous newsletter, we shared that HAE Canada submitted patient input to CDA-AMC in support of granting people with HAE with normal C1-INH access to icatibant. Following that, CDA-AMC issued its report stating icatibant should be accessible to individuals with all types of HAE.

In response, HAE Canada, in partnership with the Canadian HAE Network (CHAEN), wrote to every provincial and territorial government urging them to follow CDA-AMC’s advice and update their formularies to include people with HAE with normal C1-INH.

To amplify our message, we launched a national letter-writing campaign, encouraging our members to contact their provincial representatives and demand equal access to icatibant for all people living with HAE – regardless of type. The response has been amazing, and we know the momentum will continue to grow.

We are confident that, before long, we will be able to share the good news that equitable access to icatibant has finally been achieved across Canada.