Thanks to the Celiac Disease Foundation for facilitating the inclusion of the Global Celiac Advocacy Alliance as part of the ISSCD symposium agenda.  I’ve just returned from an inspiring few days at the Tampere Celiac Disease Symposium in Finland - an extraordinary international gathering of researchers, clinicians, and patient advocates working together to improve life for those with coeliac disease.

On Day One, the Global Celiac Advocacy Alliance (with members from Europe, North America, Mexico, Australia, and New Zealand) shared their insights, and most importantly, spirit of collaboration and friendship. This global community’s shared purpose transcends borders. Together, we are building something historic: a strong international voice to advance the health and well-being of people with celiac disease everywhere. We met on this occasion to tackle shared challenges -

• Improving food and precautionary labelling
• Raising awareness and diagnosis rates
• Collaborating on resources and research

We also built some wonderful friendships - because connection is at the heart of advocacy.

Day Two began with the ISSCD (International Society for the Study of Celiac Disease) Satellite Symposium, introduced by our patron Professor Bob Anderson, who was also honoured with the 5th Mäki Prize for his outstanding contributions to coeliac research. Three of the ISSCD working groups - GSSC (Gluten Safety and Standards Committee), B4CeD (The before celiac Disease Diagnosis committee), and Directions (advance the ISSCD’s Objectives in relation to promoting scientific knowledge, education, and quality of care of patients) - shared progress on global initiatives at Tampere University.

We also heard from international gluten-free food manufacturer Dr. Schär about the many processes and quality control systems in place to ensure gluten-free food is safe.

Day Three and Four- The main symposium spanned two days of cutting-edge science, exploring:

• Personalised medicine and disease modelling
• Risk factors and long-term consequences
• Monitoring best practices and clinical diversity

The presentation from Jason Tye-Din, who presented an update on the Novoleukin IL-2 blood assay, shows a promising diagnostic tool in development that could transform early detection of coeliac disease. While not yet available, the research is encouraging. We also heard a compelling presentation from Celiac Canada, sharing findings from their State of Celiac Disease in Canada health study. Their data highlights the urgent need for improved diagnosis, better access to care, and stronger public health support - issues echoed across many countries.

Thanks to the Celiac Disease Foundation and all our global partners for championing the patient voice. Being part of this alliance ensures that patient perspectives are not only heard but also actively shape the future of coeliac care.

Let’s keep the momentum going. If you haven’t already, join our NZ Patient Registry to help shape research, policy, and support services. Your experience matters - and together, we can drive change.