Rare diseases affect millions across Europe, yet they often remain on the margins of health policy discussions. For people living with these conditions, access to appropriate care can be inconsistent, and many face significant challenges in receiving the treatments they need.
One critical area where this is particularly evident is the supply of safe and compatible blood. For individuals with transfusion-dependent rare diseases, such as sickle cell disease (SCD), regular blood transfusions are essential to managing their condition and maintaining quality of life. However, the availability of suitable blood products varies widely across European countries, and this disparity poses real risks to patient health.
Recognising the need for greater attention to this issue, on 5 June 2025 the European Parliament hosted the event “Ensuring Safe and Sustainable Blood Supply: The Case of Sickle Cell Disease.” Organised by MEP András Kulja and supported by Terumo Blood and Cell Technologies, the gathering brought together policymakers, healthcare professionals, patient representatives, and industry experts to discuss the challenges faced by people living with SCD and explore solutions to improve access to safe blood.
“Health is a fundamental human right, not a privilege reserved for the few. Everyone, regardless of who they are or where they live, must have equal access to quality care, including lifesaving services like safe blood transfusion. No one should be left behind.”
Vytenis Andriukaitis MEP
SCD affects approximately 52,000 people across Europe, especially in countries like Spain, Italy, Portugal, Germany, France, and the UK. The disease causes red blood cells to become misshapen, leading to blockages in blood vessels and causing pain and complications that can be life-threatening. For many patients, blood transfusions are a necessary part of treatment—but access to compatible blood is often limited.
The event highlighted that while advances in blood collection and transfusion technology are making a positive difference, systemic challenges remain. There is a clear need for coordinated EU policy measures.
To better understand and respond to patient needs, it is essential to establish an EU-wide registry for SCD. In parallel, expanding newborn screening programmes across Member States would facilitate early diagnosis and timely intervention. Additionally, improving clinical training is crucial to ensure healthcare professionals are equipped with the necessary skills and knowledge to provide high-quality care to individuals living with SCD.
At Terumo Blood and Cell Technologies, we are committed to developing technologies that improve blood management. Yet, technology alone cannot solve these challenges. Political support and healthcare system readiness are equally important to ensure that patients across Europe receive equitable care.
The event at the European Parliament was a timely reminder of the importance of collaboration across sectors to build sustainable blood systems that can meet the needs of all patients, especially those with rare diseases like SCD.
With continued commitment and coordinated action, Europe can improve access to safe blood and deliver better care for rare disease patients, no matter where they live.
"Access to safe blood is not just a healthcare goal, it’s a matter of health equity and social justice. We must determine an EU response now before disparities in diagnosis, care, and availability become a much bigger problem."
András Kulja MEP
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