The Thalassaemia International Federation (TIF) is pleased to unveil the second edition of its flagship publication, “A Guide for the Haemoglobinopathy Nurse”—an essential resource designed to support and empower nurses caring for people with Thalassaemia and Sickle Cell Disease (SCD) around the world.
Nurses are the heart of haemoglobinopathy care. Their role spans far beyond routine tasks—encompassing complex clinical duties, patient advocacy, case management, emotional and psychosocial support, and education of both patients and healthcare professionals. This guide reflects the breadth, depth, and significance of their contribution.
The updated edition, following the one originally released by TIF in 2013, captures the realities of specialist nursing practice in diverse healthcare settings, including acute care, outpatient clinics, transfusion centres, and community-based services. It acknowledges the longstanding challenges in establishing the nurse specialist role, including lack of institutional support and broader systemic limitations, and calls for increased recognition, investment, and integration of these professionals into healthcare teams.
Key highlights of the guide include:
- Insights into the clinical complexity of care for haemoglobinopathies
- Emphasis on the importance of ongoing professional training and quality standards
- Real-world examples of nurses’ roles in psychosocial support, symptoms management, and crisis intervention
- The function of the nurse as a case manager, ensuring continuity of care and coordination across disciplines
- The crucial importance of empowering patients, particularly children and families, to participate actively in their care journey
Recognising the global disparities in nursing practice and support, the guide advocates for international efforts—led by organisations like TIF—to ensure that nurses everywhere receive the training, recognition, and opportunities they need to thrive and to deliver high-quality care.
TIF encourages all nurses, nurse specialists, healthcare professionals, and institutions involved in haemoglobinopathy care to download the guide, explore its resources, and share it widely within their networks.
We also welcome feedback and suggestions and encourage everyone to engage with TIF’s educational platforms—TIFLIX, the AI Knowledge Bot, and the TIF e-Academy—as we continue to develop resources that serve both patients and professionals worldwide.
