Yan Défossés
I like things that are complex and different. I'm a fervent promoter of engagement and inclusion. Also adept at new technologies, ask me how the metaverse can promote the development of diverse and authentic partnerships, and I will invite you to join a dynamic virtual community of practice. I like to add color to discussions with my French Canadian accent and my candid reflections.
Before becoming the primary caregiver for my son Liam, who lives with spinal muscular atrophy (SMA type 1), I worked in the media industry where I ran a creative agency. With other great parents, I co-founded the Quebec chapter of Cure SMA. I never miss an opportunity to be involved and collaborate to improve patient voice.
Over the past decade, my family has witnessed the evolution of medical care. We closely followed the initial clinical trials, their approval, and the intricate negotiations that led to the reimbursement of the first treatments. Today, our community has three reimbursed treatments available. The neonatal screening, enables all Canadian children to receive treatment before the onset of symptoms. These achievements are the result of intense collaboration among all stakeholders.
Nevertheless, access to products and services that meet Liam's health, education, and cultural needs remains a challenging journey. These obstacles are often encountered by individuals living with complex medical conditions.
Consequently, I continue to advocate within institutions and organizations at various levels of jurisdiction for better support and partnership between all stakeholders.
Career Stage: Patient Partner