Plasma of Hope is proud to be a member of the European Sickle Cell Federation (ESCF), a pan-European network uniting patient organisations, clinicians, researchers, and advocates committed to improving the lives of people living with sickle cell disease across Europe and beyond. As a member, we are part of a growing movement driving coordinated, patient-centred care, influencing policy, and ensuring that the voices of those most affected by sickle cell disease are heard at the highest levels.
Through our membership, we actively participate in capacity building initiatives, pan-European campaigns such as Sickle Cell Has No Colour, and landmark projects including the Sickle Cell Transitions Policy Lab co-developing solutions that have real impact for patients, families, and communities. Our membership reflects our unwavering commitment to collaboration, equity, and excellence in everything we do for the sickle cell community locally in the West Midlands, nationally, and now across Europe.
Moving from children’s (paediatric) to adult healthcare services is currently a major weak link for young people with rare diseases. Without proper support, patients transitioning into adult care face fragmented treatment, more emergency admissions, and serious health risks.
To fix this gap, the Sickle Cell Transitions Policy Lab is calling for robust EU and national policies built around a new 4-Component Charter:
Foundations: Setting clear, culturally appropriate healthcare guidelines.
Early Preparation: Starting the transition planning at least two years in advance.
Holistic Care: Supporting mental health, education, and social care alongside physical health.
Continuous Support: Ensuring active follow-ups and teamwork between child and adult medical teams.
The policy lab urges policymakers to implement these structured frameworks so every young person can move safely and confidently into adult medical care.
Read the full article on Euractiv
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