Unite4Rare wins 2026 Made with Patients Award for systematic meaningful patient engagement
Our Unite4Rare initiative has been named a winner of the 2026 Made with Patients Awards (category: Initiatives), hosted by Patient Focused Medicines Development (PFMD). With 242 nominations received and 21 finalists identified as a whole, the award recognises Unite4Rare for excellence in Systematic Meaningful Patient Engagement, celebrating our commitment to co‑creating solutions in partnership with people living with rare diseases and caregivers across the rare disease community.
Through Unite4Rare, we have developed a structured and systematic approach to patient engagement, including measurable impact indicators, transparent feedback loops and collaborative design processes. Together, these ensure that the voices, perspectives and lived experience of people living with rare diseases are embedded at every stage of development.
“We are honoured to recieve this recognition,” says Donatella Decise, Global Director Patient Engagement and Patient Communications at Sobi. “Unite4Rare reflects our belief that meaningful progress is created together with patients and caregivers, as true partners shaping solutions for the rare disease community.”
Giampiero Marra, Head of Global Patient Engagement and Patient Communications, continues:
“This award reinforces our commitment to systematically embedding the perspectives of people living with rare diseases across all parts of our organisation. It is a proud moment for all of us at Sobi and for the communities who inspire us every day.”
The award was presented during the Patient Engagement Open Forum (PEOF) on 3 June 2026 in Sevilla, Spain.
For more information about Unite4Rare:
The 2026 Made with Patients Awardees
The Global Patient Engagement Team with the Made with Patients Award received in Sevilla (left to right: Giampiero Marra, Jason Donohue, Evelyn Kremer, Donatella Decise)
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