Living with a rare disease is not easy, it can be confusing, frustrating and scary. It is even harder when you face these challenges alone. Derek, an HAE patient, wanted to create a way to connect young people across Canada who have been diagnosed with HAE. His goal was a support system for youth all across Canada, where they could connect and communicate with others who could understand and relate to their experiences.
Sadly, Derek passed away on HAE Day, May 16, 2012 and did not get to see this goal realized. HAE Canada is proud to honour his memory in our efforts to join together Canadian youth living with HAE.
Why join our Child and Youth programs?
The Brady Club
Once children become child and youth associates of HAE Canada, they are eligible to join The Brady Club. The Brady Club, for children between 4 and 12 years old, is designed and organized by the US Hereditary Angioedema Association (HAEA) but welcomes individuals in the international community. The Brady Club provides an online safe space customized for children diagnosed with HAE and is designed to help young HAE patients better understand, manage, and cope with their disease. When children join online, the interactive website offers fun ways for them to feel inspired, empowered, and connected to other kids who share their experiences.
Please note: children will not become a member of HAEA when they join the Brady Club.
HAEi Youngsters Community
We encourage all young Canadians who have a connection with HAE to join HAE International’s Youngsters Community. This group is for HAE patients and their caregivers, siblings and partners between the age of 12 and 25.
Whether you are newly diagnosed, starting school, university, moving abroad, or starting a new job, we think you will really benefit from joining the Youngsters group.
On their website, you can find SO MANY resources and tools (too many to list here) that can help you learn more about HAE. Whether you want to build awareness about HAE in your community, become an HAE advocate, or simply need a way to explain what HAE is at school – they have you covered!
Their goal is to learn, stay connected, grow our global community, share our experiences and have fun together! So please click the logo and join HAEi Youngsters today.
HAEi LEAP Program
If you are a member of HAE Canada and interested in learning practical advocacy skills, then the LEAP program is for you!
HAEi LEAP is an educational program, developed by HAEi, that allows young people to learn new skills and develop as individuals, and advocates. Young people will also have the chance to gain experience working with their Member Organization (HAE Canada) to apply all those skills on a project to support advocacy, their MO, and their community.
Here are some skills you will learn with the LEAP Program:
- Project management skills
- Public speaking / presentation skills
- Writing reports / proposals for advocacy projects
- Media training (speaking to journalists / media)
- Self-publishing online – websites
Please click the logo to learn more and apply to the next LEAP session.
