Xavier, filmmaker, US, living with autoimmune type 1 diabetes
STORY
Youth-focused programs raise awareness of type 1 diabetes
With type 1 diabetes (T1D) rising in young people, we are playing a proactive role in boosting awareness and early detection.
In Italy, we created D1VE, a working group of patient organizations, healthcare professionals, and institutions focused on pediatric T1D. In 2024, D1VE presented 16 recommendations for optimizing T1D screening to the Chamber of Deputies, which were accepted in 2025.
D1VE will now help implement Italy’s National Screening Program.
In the UK, we co-created the world’s first T1D pop group with patients and advocacy groups, inviting young people to share their experience. Their original song, Rise Up, generated more than 59 million impressions online and was streamed 14,000 times. It even reached Parliament, prompting discussion about early detection of T1D.
STORY
Collaboration across therapeutic areas centers on patient voices
Across disease areas, our partnerships helped grow patient voices in healthcare systems worldwide. In transplant, we worked with global patient advocacy groups (PAGs), equipping communities with the knowledge and tools to advocate independently, which contributed to an EU regulatory re-examination dossier. Our shared work spanned quality of life surveys, horizon scanning, journal publications, and country-level manifestos.
We also supported the new French collective “Acting Together for the Recognition of Chronic GVHD,” which calls for chronic graft-versus-host-disease to be recognized as a rare disease, with dedicated funding and clear care protocols. This 2025 policy action is based on work conducted in 2024, including a quality of life study and input from healthcare professionals.
In Spain, we partnered with healthcare professionals, patient associations, and policymakers on a comprehensive report on COPD. It identified 15 priority gaps in diagnosis, treatment access, and integrated care. The initiative, endorsed by SEPAR and supported by FENAER, EPOC España, and APEPOC, contributed to policy dialogue while highlighting patient voices.