23/10/2025
Bridging the gap: presenting the Sickle Cell Transition Charter at the European Parliament🌍
📍On 16 October 2025, the European Parliament hosted a high-level roundtable on “Bridging the Gap: Sickle Cell Disease as a Case Study of Paediatric to Adult Transition in Rare Disease”, organised by the Sickle Cell Transitions Policy Lab in collaboration with the European Sickle Cell Federation (ESCF) and -EuroBloodNet (European Reference Network on Rare Hematological Diseases).
During the event, Mariangela Pellegrini, representing ERN-EuroBloodNet, presented the Charter for Optimal Transitions in Sickle Cell Disease — a collective policy framework developed with clinicians, patients, and experts across Europe to strengthen continuity of care between paediatric and adult services.
✳️The discussion, moderated by Mario Ottiglio from the World Coalition on Sickle Cell Disease (WCSCD), brought together key voices including Hélène Le Borgne from the European Commission (DG RTD.D2 – Health Innovations & Ecosystems), Mimi Minsiemi, patient advocate from Belgium from European Federation of Sickle Cell, and MEP Vytenis Andriukaitis, former European Commissioner for EU Health and Food Safety, now Member of the European Parliament.
Speakers highlighted that the transition from paediatric to adult care remains a critical point of vulnerability for many young people living with rare diseases — often leading to fragmented care, poorer outcomes, and increased long-term health costs.
The Charter identifies four key pillars for effective transition:
1️⃣ Setting the right foundations
2️⃣ Early and structured preparation
3️⃣ Holistic, multidisciplinary care
4️⃣ Continuous follow-up and evaluation
🎯As underlined during the debate, European Reference Networks ( ) have a central role to play in bridging this gap — by connecting expertise, harmonising data, and supporting Member States in implementing evidence-based transition policies.
At ERN-EuroBloodNet, we remain committed to advancing this work, ensuring that every young person living with sickle cell disease, and other rare haematological conditions, can move safely and confidently into adult care with the support they need and deserve.
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Read more about the Charter: https://www.mhpgroup.com/the-charter-for-optimal-care-transitions-from-paediatric-to-adult-care-in-sickle-cell-disease/
Euractiv coverage: https://www.euractiv.com/opinion/bridging-the-gap-sickle-cell-disease-as-a-case-study-of-paediatric-to-adult-transition-in-rare-disease/
Policy Lab video: https://youtu.be/POEBC0YEMgM?si=2RdLnTygz6Zqhcjv
European Commission
