Last November, I had the opportunity to attend the annual international conference of the International Society for Pediatric and Adolescent Diabetes, held this year in Montreal. As DAC’s Francophone Engagement Coordinator, my goal was to learn about new clinical, policy, and advocacy developments, while proudly representing and championing Francophone voices. Accompanied by my colleague Linxi Mytkolli, we took part in numerous meetings, discussions, and learning opportunities around a shared theme: improving the quality of life of children, adolescents, and their families affected by diabetes. As this was my first international conference, I was particularly impressed by the richness and diversity of the exchanges that took place. It is by being exposed to different ideas and approaches that new avenues for reflection emerge and practice changes can take shape.

Learning more about barriers to care in other countries prompts reflection on our own system and highlights areas for improvement that still need to be explored to optimize access to care and services in an international context. One example that stood out to me was the moving session by Ms. Fauzia Moyeen from Pakistan, titled “What to do when there is no glucagon,” a reality that may seem far from ours but is very relevant in several remote and central regions of Canada.

Among the conference highlights, I was particularly touched by the session that immediately followed the opening lecture, titled “Advocacy is for All of Us.” Seeing the emphasis on advocacy right at the start of the conference sent a strong message: the engagement of people with lived experience of diabetes is not optional; it must be at the heart of ALL initiatives, whether clinical, research, or organizational. Decisions that are not made with the people directly affected are disconnected from reality. Too often, patient and family participation remains symbolic, sporadic, or restricted to rigid questions that do not impact their quality of life.

This reality was illustrated by several inspiring sessions: the practical workshop “Making the Case: Advocacy Strategies to Secure Funding for Pediatric Diabetes Care” presented by Didier Jean Pierre, whose talk was both inspiring and concrete: We are not anti-government, we are pro-impact. The session “#DEDOC: Advancing Diabetes Care in Complex Settings: Evidence, Experience, and Advocacy: What we wish you knew and why,” which included Linxi Mytkolli’s presentation on the co-created project with an Indigenous partner within the Research to Action Fellowship at Diabetes Action Canada, was also particularly impactful. Additionally, Ana Alvarez Pagola’s presentation “Adjunct therapies: beyond glucose therapies” highlighted several needs of people living with diabetes by integrating the patient perspective into therapeutic innovations. The conference “Advocacy meets Science: The Advocate’s Role in Advancing Diabetes Research with Patient-Centric Insights,” presented by diabetes advocates from the DAC and DEDOC communities, excellently showcased examples of co-created projects incorporating lived experience. Finally, I would like to mention the session “Are we ready to introduce DIY to a broader audience,” which included the perspective of people with lived experience of diabetes presented by Marie-Laurence Brunet. DIY systems are appreciated by patients but are sometimes a taboo topic in healthcare, and this session highlighted their benefits.

The discussions initiated at ISPAD are encouraging: the importance of patient and family participation is increasingly recognized. However, concrete implementation remains uneven, and many contexts could benefit from more systematic and structured involvement. While the lived experience of adults, the support networks of parents, and the expertise of healthcare professionals are often highlighted, the perspectives of children and adolescents remain too rare. Living with diabetes through a child’s eyes is not the same experience as what adults recall today. Why not find ways to include them in these discussions? For example, for future conferences, co-creating youth panels that create space for discussion of issues that matter to them.

As I left downtown for the greater Montreal area, I did so with a full heart, carrying new connections, new learnings, and new ideas that will meaningfully shape my work at DAC over the coming year. For example, in the recruitment of patient partners for your Patient Circles, we are intentionally strengthening inclusive leadership by appointing two co-chairs, one of which is specifically reserved for a youth representative. This structure aims to move beyond symbolic engagement and create meaningful space for youth voices in decision-making processes that directly affect them. 

ISPAD was an incredible experience for me and reinforced my conviction that every initiative gains relevance and impact when people with lived experience are fully involved in its design and implementation.