Prime Highlights:
- The Sickle Cell Transitions Policy Lab calls for EU and national leaders to implement policies that help young people with rare diseases move safely from paediatric to adult care.
- The Charter for Optimal Transitions outlines four key steps, foundations, pre-transition planning, holistic care, and continuous support, to ensure smooth transitions and better long-term health.
Key Facts:
- Sickle cell disease is an inherited blood disorder becoming increasingly common across Europe, highlighting the need for structured transition policies.
- Adult healthcare services often struggle to meet the specific needs of young patients, but proper policies can reduce emergencies, prevent complications, and improve outcomes.
Background:
The transition from paediatric to adult healthcare is a critical stage for young people living with rare diseases, including sickle cell disease. Experts warn that without structured and supportive transition pathways, these patients face increased health risks, poor quality of life, and even premature death.
Recent EU policies have improved access to diagnosis, treatment, and clinical research for rare disease patients. However, many young people still encounter fragmented care during the move from child-focused to adult services. Health systems often do not have the guidelines, tools, or resources needed, so patients have to manage their own care.
The Sickle Cell Transitions Policy Lab held a roundtable to share experiences and highlight lessons from sickle cell disease that could benefit the broader rare disease community.
The Sickle Cell Transitions Policy Lab says young people need clear, supportive transition policies. The Charter for Optimal Transitions highlights four key steps: provide guidance and education, start planning early, support mental health and social needs, and have regular follow-ups to ensure a smooth move to adult care.
MEP Vytenis Andriukaitis said, “European Reference Networks have been game-changers for rare disease patients and can improve access to care for both children and young adults.”
Sickle cell disease, an inherited blood disorder becoming more common in Europe, shows the challenges of transitioning to adult care. Adult healthcare often cannot fully meet the needs of young patients, but good policies can help prevent emergencies, avoid complications, and improve long-term health.
The Sickle Cell Transitions Policy Lab asks EU and national leaders to use these recommendations so every young person with sickle cell disease or another rare disease can move to adult care safely and confidently.
