Observed annually on 8th May, World Thalassaemia Day aims to raise global awareness about thalassaemia, a serious inherited blood disorder, and to advocate for better care, support, and prevention strategies.
Theme for 2025
“Together for Thalassaemia: Uniting Communities, Prioritising Patients”
- Focuses on a patient-centered approach
- Emphasizes the emotional, social, and medical needs of thalassaemia patients
- Advocates for inclusive healthcare policies and global unity in the fight against the disease
Key Objectives of Day
- Awareness: Educating the public about thalassaemia and its symptoms
- Advocacy: Urging governments and healthcare systems to invest in research and treatment
- Support & Solidarity: Bringing together patients, families, and healthcare professionals
- Research Promotion: Calling attention to the need for innovation in treatment and cures
What is Thalassaemia?
- Genetic blood disorder affecting haemoglobin production
- Results in anaemia due to rapid breakdown of red blood cells
- Severity depends on type and number of gene mutations
Screening for Thalassaemia
Prenatal Testing Methods:
- Chorionic Villus Sampling (CVS) –
- Performed during 11–14 weeks of pregnancy
- Sample of placental tissue collected for genetic analysis
- Amniocentesis –
- Conducted around 16th week of pregnancy
- Amniotic fluid tested for presence of thalassaemia gene mutations
Types of Thalassemia
Alpha Thalassemia: Caused by deletion/mutation of 1 to 4 alpha-globin genes
| Genes Affected | Impact |
| 1–2 genes | Mild/no symptoms or minor anaemia |
| 3 genes | Moderate to severe symptoms (e.g., fatigue, splenomegaly) |
| 4 genes | Often fatal; results in stillbirth unless treated |
Beta Thalassemia: Caused by mutation in one or both beta-globin genes
| Type | Impact |
| One faulty gene | Mild/no symptoms; may remain undiagnosed |
| Two faulty genes | Severe anaemia from early childhood; requires lifelong transfusions |
Background
- Initiated in 1994 by Panos Englezos, founder of Thalassaemia International Federation (TIF)
- Dedicated to the memory of his son George Englezos, who died from thalassaemia
- The day honors all who have lost their lives and highlights the ongoing struggle of patients worldwide