HAE Canada Derek Scott Simon Child & Youth Program
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 persons 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.