Highly commended
Voices, Vision, Change: Redefining Sickle Cell Care Transitions Across Europe
Summary of work
Across Europe, the transition from paediatric to adult care is the most vulnerable period for young people with sickle cell disease (SCD). Despite improvements in childhood survival, transition services are fragmented and inconsistent, contributing to increased hospitalisations and doubled mortality.
But no European definition of high-quality transition care exists and the patient voice is rarely embedded in service design.
To address this, Novo Nordisk and Pfizer brought together an ambitious pan-European Policy Lab uniting 40 patients, carers, clinicians and policymakers from 11 countries. They participated in six Policy Lab and four Lived Experience Council meetings across 2024–2025 to co-develop the Charter for optimal care transitions from paediatric to adult care in sickle cell disease.
The Policy Lab co-created multilingual tools including an advocacy toolkit, storytelling film and video series. The partnership culminated in launches at the European Haematology Association Congress and European Parliament, positioning the Charter with Europe’s leading clinicians and policymakers.
Engagement exceeded all targets:
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80 pledge signatures (target 50).
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115 people from 17 countries at events (target 75 from 10 countries) .
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400+ Charter downloads (target 200).
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Euractiv generated 85,344 impressions.
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Additional reach through EHA and Orphanet newsletters.
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Formal endorsement by ERN-EuroBloodNet and European Sickle Cell Federation.
Judges’ comments
The judges felt the ‘Voices, Vision, Change’ entry addressed a meaningful and authentic topic, successfully responding to a real need. It demonstrated a strong structure and conveyed its ideas effectively. It was a wll organised and collaborative initiative which has clearly started to gain traction a policy level. The judges could see there was more to come!
