About The Sickle Cell Transitions Policy Lab
The Sickle Cell Transitions Policy Lab
The Sickle Cell Transitions Policy Lab is a collective of patient representatives, advocates, clinicians and system experts from 11 countries across Europe working to co-create solutions grounded in the lived experience of sickle cell disease and the operational realities of health systems.
The Policy Lab was established in 2024 to drive health system change and improve outcomes for people living with sickle cell disease during the transition from paediatric to adult care. It is co-chaired by the European Sickle Cell Federation and ERN-EuroBloodNet.
Our vision is to ensure a continuous, coordinated and compassionate healthcare journey, optimising mental and physical well-being during every stage of the care transition
Through the Policy Lab, we aim to:
- Sign the pledge to help implement the recommendations set out in our Charter
- Share the Charter on social media using the hashtag #SCDTransitionCharter
- Invite others to read the Charter and sign the pledge
- Use the resources we have developed in your advocacy efforts
In 2024 and 2025, the Policy Lab developed and launched the Charter for optimal transitions from paediatric to adult care in sickle cell disease.
The Charter for optimal care transitions
The Charter defines an optimal transition that all people living with sickle cell disease should experience, wherever they live, and outlines the essential steps to deliver holistic, coordinated and continuous care.
It is a call to action for policy and decision-makers across Europe, calling for robust policies at the EU and national levels to:
- Accurately represent the patient experience across the sickle cell disease care transition
- Drive sustainable health system change which directly improves health outcomes and quality of life
- Share best practice across Europe
The Charter is available in English, French, Italian and Spanish.
Novo Nordisk and Pfizer commissioned and funded the production of this Charter. The Charter has been developed by the members of the Sickle Cell Transitions Policy Lab and Lived Experience Council, with support from MHP Group acting as Secretariat. The companies provided no direction on the recommendations made by the authors within the Charter. The companies did not provide substantive input to the Charter language; however, both companies have reviewed the Charter for factual accuracy and to ensure compliance with all relevant industry codes of practice, including those of the EFPIA and ABPI.
A full list of Policy Lab and Lived Experience Council members can be found here.
Click here to view resources developed by the Policy Lab that you can download and use
How you can get involved
All young people living with sickle cell disease deserve to experience a smooth and person-centred transition. Your support helps raise the profile of transition as a major policy and health issue in sickle cell disease.
To support the work of the Sickle Cell Transitions Policy Lab, we encourage you to:
- Sign the pledge to help implement the recommendations set out in our Charter
- Share the Charter on social media using the hashtag #SCDTransitionCharter
- Invite others to read the Charter and sign the pledge
- Use the resources we have developed in your advocacy efforts
With your support, we can ensure every young person living with sickle cell disease experiences a transition with the best possible care tailored to their needs.