What positive changes have happened for people with HAE, in your country, from 2012 to now?
The positive changes that have happened for people with HAE in Canada are:
- HAE Canada (HAEC) is able to advocate specifically for HAE patients to Canadian Blood Services and the provincial and federal governments.
- Patients are continuously diagnosed each year as awareness increases.
- Clinical trials take place in Canada.
- Different treatments are being approved by Health Canada; these treatments are eventually made available to patients through both public and private funding sources.
- The number of HAE specialists steadily increases.
- The Canadian/International HAE Guidelines were developed and recently updated.
- Board members learn about issues surrounding rare diseases by attending both national and international conferences.
- HAEC members have completed various surveys, providing important data to illustrate patient product use, symptoms, needs & quality of life to give a full understanding of what it is like to live in Canada with HAE. The data has been made into abstracts and posters and shared at national and international conferences, as well as patient submissions for the Canadian Agency for Drugs and Technologies in Health (CADTH), Institut national d’excellence en santé et services sociaux (INESSS) to support treatment approvals.
- The HAEC website provides members with updated information about HAE, treatments, programs and more.
- HAEC quickly provides information to our membership through our various social media platforms.
- HAEC hosts, both in person, and virtual, patient information events across the country to connect with our membership and to keep our members informed of various topics such as new treatments.
- With the HAEC Board representing different parts of Canada, members across the country have a Regional Director dedicated to providing support in their own region.
- Developed HAE resources that are provided to new members and (upon request) healthcare providers, and also shared at conferences and events.
- Developed the HAEC Child and Youth Program, which allows HAEC members to join HAEA’s Brady Club as well as HAEi’s Youngsters’ Community.
What is the biggest achievement for people with HAE, in your country, from 2012 to now?
The biggest achievement for people with HAE in Canada is access to a variety of HAE treatments. Our membership appreciates that HAEC recognizes the importance of a variety of treatments and continues to advocate for access to new treatments for Canadian HAE patients.
What is the resource, event or activity that you are most proud of organizing for people with HAE in your country, from 2012 to now?
The events that HAEC is most proud of organizing for people with HAE in Canada are our Patient Information Events across the country. These happen on a semi-regular basis to bring members together to ensure they remain connected and up to date on issues that matter to patients and their caregivers.
What support/ resources have you used from HAEi? What has HAEi helped you to achieve?
Supports, resources and achievements that HAE Canada has gained from HAEi are:
- Website hosting.
- Assistance from our RPA.
- Attending HAE Global Conferences.
- HAEi presenting at a Patient Information
- Helping with various issues and situations, HAEC receives continuous advice and support from regular meetings with the HAEi President.
- Canadian youth have attended the HAEi Youngsters Camp.
- Canadian youth have benefited from joining the HAEi Youngsters Community.
- HAEi helped get HAEC officially recognized.
Your Next Step… What do you want to achieve for people with HAE in your country by 2030?
The next steps for HAE Canada are:
- When possible, welcoming HAEi representatives to Canada to learn about how to partner with upcoming projects, such as HAEi Connect.
- Helping Canadian HAE patients with Normal C1 gain access to the variety of treatments that benefit patients with HAE Type 1 & 2.