Bangladesh Thalassemia Patients and Parents' Welfare Association launched for welfare of thalassemia-affected individuals

Marking World Thalassemia Day, a new platform - Bangladesh Thalassemia Patients and Parents' Welfare Association (BTPWA) - was officially launched today at a press conference held at the National Press Club, Dhaka.

The association aims to work for the welfare of individuals affected by thalassemia with a focus on improving quality of life for patients, raising public awareness to prevent new cases and advocating for the rights of those living with the condition, reads a press statement issued today (11 May).

Thalassemia is a life-threatening inherited blood disorder that affects haemoglobin production. Every year, May 8 is observed globally as World Thalassemia Day to promote awareness, support affected individuals and encourage preventive action. The formation of BTPWA adds a much-needed voice to this ongoing effort in Bangladesh.

BTPWA is a charitable, non-political and non-profit organisation driven by individuals living with thalassemia and their families. The association was officially registered with the Department of Social Services of the Government of Bangladesh on 19 March 2025.

Guests and Speakers at the launch event included Professor Dr ABM Yunus, former chairman of the Department of Hematology at Bangladesh Medical University, Professor Dr AKM Amirul Morshed Khosru, secretary general of Children Haematology and Oncology Society of Bangladesh, and former director general of the Directorate of Health Education; Professor Dr Md Anwarul Kabir, chairman, Dept of Child Hematology and Oncology, Bangladesh Medical University; Professor Dr Tasnim Ara, Dept. of Hematology, Dhaka Medical College and Hospital; Professor Dr Rezaul Karim Kazal, Dept of Pediatrics and Gynecology, Bangladesh Medical University; and Dr Md. Adnan Hasan Masud, secretary general, Hematology Society of Bangladesh; Associate Professor, Dept. of Hematology, Bangladesh Medical University

Presiding over the event, Professor Dr Belayet Hossain, advisor to BTPWA and head of the Department of Hematology and Oncology at the Bangladesh Shishu Hospital and Institute, emphasised that the most effective strategy to prevent thalassemia is identifying carriers through the "Hemoglobin Electrophoresis" test and avoid marriages between carriers.

He stressed the importance of prenatal diagnostic testing in carrier-carrier unions to prevent birth of children with thalassemia major.

Kamrun Nahar Mukul, the founding president of BTPWA and a thalassemia survivor herself, shared her journey of resilience and commitment: "We have long stood beside thalassemia-affected children. Through this organisation, we can now work in a more structured and impactful way."

The association, formed with the collective initiative of affected individuals and their supporters, has already made significant steps in recent years. It has organised meetups for patients and families, awareness seminars, carrier screening camps, online and offline counselling services and charitable programs during Eid and winter seasons.

Key demands of BTPWA to the government are:

1. Blood testing centres must be equipped to serve thalassemia patients properly
2. Ensure free or subsidised medicine for all thalassemia patients
3. Mandatory blood grouping and haemoglobin electrophoresis test records in the national ID cards of patients
4. Establish at least two thalassemia care units in every government hospital
5. Make carrier testing mandatory for all citizens, especially before school/college admission and marriage
6. Establish DNA labs and prenatal diagnostic facilities in every divisional city
7. Ensure government protection by including thalassemia patients in the Medical Treatment Act 2013
8. Raise national awareness to eliminate social stigma and misinformation about thalassemia

BTPWA believes that with strong government support and active public engagement, a thalassemia-free Bangladesh is an achievable goal.