Latest News
2023 – 2024 Board of Directors
Thank you to our members who cast their vote during the 2023 Annual General Meeting on November 14th, either in person or via proxy; your presence allowed us
I am Number 12 Campaign
HAE Canada, along with 12 other rare disease patient organizations, and Takeda Canada, unite to launch the I Am Number 12 campaign. This campaign elevates the voices of
ORLADEYO (oral treatment) is recommended for reimbursement in Quebec
Institut national d'excellence en santé et services sociaux (INESSS), whose missions is "to promote clinical excellence and the efficient use of resources in the health and social services
TAKHZYRO available through Veterans Affairs Canada
Qualifying HAE patients who access treatments through Veterans Affairs Canada (VAC) now have access to Takhzyro. Please speak to your treating HAE specialist about how you can access
TAKHZYRO available in PEI
Great news for eligible HAE patients in PEI. Lanadelumab (TAKHZYRO), a subcutaneous injection to routinely prevent attacks in patients with HAE Type I or II (12 years old
Improved access to affordable and effective drugs for rare diseases in Canada
On March 22, 2023, the Canadian federal government announced their plan to provide up to $1.5 billion over three years to implement the Rare Disease Drug Strategy, as
CADTH Recommends Reimbursement for ORLADEYO
We are thrilled to share that the Canadian Agency for Drugs and Technologies in Heath (CADTH) recently announced that they are recommending the oral treatment ORLADEYO (berotralstat), for
Rare Disease Day Breakfast with CORD
To honour Rare Disease Day 2023, HAE Canada President, and Ontario Regional Director, Michelle Cooper, spent the morning at a breakfast reception at Queen's Park in Toronto. Thank
HAEC Board member featured in Canada’s Rare Voices 2023
For Canada's Rare Voices 2023, Patient Voice teamed up with 12 patients and their families, clinical experts and patient-centric biopharmas to shed some light on rare disease communities.
Updates to our Board of Directors
We have some announcements to make about the HAE Canada Board of Directors. The 2022-2023 Board of Directors was elected at our Annual General Meeting in November. Following
2022 HAEi Global Leadership Workshop
Traditionally, every two years, HAE International (HAEi) hosted the HAE Global Conference where patients, caregivers, member organizations, pharmaceutical companies and physicians joined together to learn and connect. This
CBS Announces Results of the RFP for PPRP
Canadian Blood Services (CBS) Announces the Results of the Request for Proposals (RFP) for Plasma-Derived Plasma Protein and Related Products (PPRP). Through their formulary, CBS provides many patients
The 2022 Virtual Global Walk
To celebrate hae day 🙂 over 5,000 people around the world contributed their steps to the 2022 Virtual Global Walk. Thank you to the 911 Canadians who added their
Health Canada Approves ORLADEYO
We are thrilled to share BioCryst Pharmaceutical's big announcement: Health Canada has approved their oral, once-daily ORLADEYO® (berotralstat) for the routine prevention of HAE attacks in patients 12
Takeda Canada Awarded Tender for TAKHZYRO
Héma-Québec, the organization in Quebec that manages blood and biological products, has awarded a two-year tender for TAKHZYRO® (lanadelumab injection), as the sole option for prophylaxis subcutaneous
HAEi Advocacy Academy
HAE International is offering free, online advocacy courses. This extremely comprehensive program is designed to support people with HAE in everyday life. The courses are delivered in small manageable chunks and can
Our Next Patient Information Update: November 20, 2021
Please join us on Saturday November 20th from 1:00-3:00pm ET for our next Update! Details can also be found on our Upcoming Events page.
Notice of the 2021 AGM
We hope you can join us for our 2021 AGM. Please check your inbox for the invitation and links to register. Please check your spam box if you
Save the Date: Nov 20, 2021
Please mark your calendars! HAE Canada is hosting a Virtual Patient Information Update on November 20th at 1:00pm ET. Speakers, topics and other important details will be shared
Lanadelumab Added to NS Formulary
Lanadelumab (TAKHZYRO), a treatment to routinely prevent attacks in patients with HAE Type I or II who are 12 years old and up, was recently added to Nova
Congratulations Heather Dow
Who is Heather Dow? Heather has been supporting HAE Canada in many ways over the years, from providing technical support for our virtual Patient Information Updates and organizing
Winning the HAE Global Walk
Congratulations to the Canadian HAE Community! Canadians logged the most steps to win the 2021 Global Walk for a third time. Thank you very much to all who
2021 HAE Day 🙂
Happy HAE Day and Happy 10th Anniversary! We hope everyone celebrated HAE Day 🙂 by doing something extra fun. Did you go for a hike? Did you plant
TAKHZYRO: Available in Saskatchewan
HAE Canada is happy to share that Saskatchewan is the latest province to add lanadelumab (TAKHZYRO), a subcutaneous preventative HAE treatment, to their provincial drug formulary. Please click
HAEGARDA: Available Across Canada
We are over the moon that our members are telling us that they are excited about having access to HAEGARDA, a subcutaneous C1 esterase inhibitor (C1-INH) prophylaxis therapy