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Zubaida calls for nationwide database of thalassaemia, rare disease patients

Staff Reporter:

Ziaur Rahman Foundation Vice-President and noted physician Dr Zubaida Rahman on Friday called for creating a nationwide database of people suffering from thalassaemia and other congenital rare diseases to ensure better care and support for patients.

“It is necessary to prepare a nationwide database of people suffering from thalassaemia and other congenital and rare diseases, and to maintain a registry,” she said.

Zubaida Rahman was addressing the “Blood Donor Award 2026” programme as the chief guest at the Institution of Engineers, Bangladesh (IEB) auditorium in the capital in the afternoon.

The programme was organised by the Bangladesh Thalassaemia Society (BTS) marking World Blood Donor Day.

Zubaida Rahman said, “Although it may not be possible to cure thalassaemia fighters completely, we must extend reassurance to them and their families through compassion and empathy.”

She also urged the authorities concerned to introduce screening for expectant mothers to help prevent thalassaemia.

“Thalassaemia can be detected through screening during pregnancy. The disease can also be identified at any age through screening tests,” she said.

She suggested expanding awareness and screening programmes on thalassaemia to district hospitals, upazila health complexes, union-level health facilities and villages across the country.

Referring to the government’s plan to recruit 100,000 health workers, Dr Zubaida said they could be provided with comprehensive training on thalassaemia, including its symptoms, treatment and ways to counsel and reassure patients.

She also suggested categorising diagnosed patients into thalassaemia major, thalassaemia minor and thalassaemia trait to facilitate appropriate treatment and care.

“If physicians provide treatment with the highest possible level of caution and sensitivity, patients and their families will feel much more reassured,” she said.

Expressing gratitude to voluntary blood donors, Dr Zubaida congratulated them for their humanitarian service.

She also specially congratulated her daughter, Zaima Rahman, saying she had voluntarily donated blood seven times.

Dr Zubaida thanked all members of the Bangladesh Thalassaemia Society for standing beside thalassaemia patients and their families since 1989.

Health and Family Welfare Minister Sardar Md Sakhawat Husain, Dhaka South City Corporation Administrator Bir Muktijoddha Md Abdus Salam and Executive Director of the Ziaur Rahman Foundation Professor Dr Farhad Halim Donar, among others, addressed the function, chaired by Bangladesh Thalassaemia Society President Engineer MA Matin.

Doctors Association of Bangladesh (DAB) President Professor Dr Harun Al Rashid and Rajdhani Unnayan Kartripakkha (RAJUK) Chairman Engineer Md Riazul Islam were also present on the occasion.

Awards were presented to voluntary blood donors and organisations for their contributions to blood donation activities.

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