16/05/2026
Building an Ecosystem of Thalassemia Care
A comprehensive thalassemia care programme, “Building an Ecosystem of Thalassemia Care” was successfully conducted at Manipal Hospital, Yelahanka in collaboration with the Thalassemia and Sickle Cell Society of Bangalore on March 22, 2026. The programme brought together patients, caregivers, clinicians, and stakeholders with the shared goal of advancing holistic and sustainable thalassemia care.
The event commenced with a ceremonial lamp lighting in the presence of distinguished dignitaries including representatives from government bodies, healthcare institutions, and patient advocacy groups. The inaugural session emphasized the importance of collaborative care, awareness, and community support in improving outcomes for children and adults living with thalassemia .
The programme witnessed active participation from:
40 patients with thalassemia major, all of whom underwent a comprehensive health evaluation
Multiple parents, caregivers, and resident doctors, who actively engaged in the academic and awareness sessions
The key highlights of the programme were,
Detailed clinical examination and chelation assessment
Endocrine evaluation
Guidance on long-term disease monitoring and care
HLA typing camp was organised with the help of Bal Ayush foundation and DKMS
Additionally, 15 adult patients underwent MRI (T2*) of the heart and liver at a subsidized cost to assess iron overload—an essential component in preventing long-term complications.
The scientific programme covered a wide spectrum of thalassemia care, delivered by multidisciplinary experts:
Preventive strategies and the roadmap to zero thalassemia, focusing on preconception screening, antenatal diagnosis, and public health integration
Safe blood transfusion and chelation practices, emphasizing individualized transfusion protocols, iron overload monitoring, and adherence to therapy
Curative options including hematopoietic stem cell transplantation (HSCT), highlighting patient selection, donor matching, and outcomes
Endocrine and metabolic complications, stressing the importance of early screening and long-term monitoring
Orthopaedic manifestations, including bone health, growth issues, and prevention of long-term skeletal complications
Critical illness and emergency recognition, underscoring preventable complications and the role of timely intervention
Psychosocial support, addressing the emotional and psychological needs of patients and families
Panel discussions on adolescent and adult challenges and patient advocacy (PWD rights) further enriched the programme by addressing real-world concerns beyond medical management.
The overarching vision—to create a structured ecosystem for thalassemia care and move towards advanced, curative, and preventive strategies—was strongly reinforced.
The programme received overwhelmingly positive feedback from patients, caregivers, and attendees. It was also an enriching and satisfying experience as doctors to be able to address their concerns and feel together in working for a unified cause.
