UAE to have nationwide database for thalassemia patients by 2025 end

The Emirates Thalassemia Society (ETS) on Thursday organised the 3rd brainstorming forum marking the International Thalassemia Day at Fairmont Hotel in Dubai.

Titled ‘We gather you today to make you happy tomorrow’, the forum was held under the patronage and in the presence of the wife of Dr Sheikh Sultan Bin Khalifa Bin Zayed Al Nahyan, Advisor to the President of the State, Sheikha Sheikha Bint Saif Al Nahyan, Chairperson of the Board of Directors of ETS.

Sheikha Sheikha expressed her happiness about organising the third forum, which discussed ideas and came out with recommendations aimed at providing the best services to thalassemia patients.

She also thanked the Ministry of Health and Prevention for its ongoing co-operation with the society as a strategic partner in many positive initiatives, which contributed and still contribute to spreading cultural and health awareness about thalassemia and limiting its spread by reducing the number of new births.

The society and other foundations encourage the organization of such events, which have a significant impact on the development and prosperity of society, praising the initiative under which the most iconic landmarks of the country lit up in red as was the case over the past two years.

Meanwhile, Abdul Basit Mardas, Vice President of ETS, revealed that a nationwide database for thalassemia patients was being created in co-operation and co-ordination with health authorities. The database is expected to be completed this year, he said.

The number of patients with thalassemia registered with the ETS ranges between 700 and 800, while the number nationwide exceeds 1,500, he added, noting that work is underway to open a thalassemia centre in Abu Dhabi, bringing to four the total number of centres. Currently there are three thalassemia centres operating in Dubai, Fujairah and Ras Al Khaimah, he said.

The ETS has expanded its partnerships with new institutions that serve patients in all fields, he added. At the medical level, the ETS signed a memorandum of understanding (MoU) with the Laser Medical Centre ‘LMC’ for dentistry, with the aim of serving and caring for thalassemia patients who suffer from various dental problems, he added.

It was agreed that a specific number of thalassemia patients eligible for support to be treated free of charge and others with discounts of up to 40 per cent on all services provided by the centre, he said, adding that another MoU was signed with the Global Advocacy and Legal Counsel to support the ETS.

Khalida Khamma, Member of the Board of Directors, Secretary and Executive Director, stated that the discussions held at the brainstorming forum provide great hope for patients and their families, especially regarding new gene therapy, developments in bone marrow transplants and various specialties. The forum also discussed the need for patients to be brought closer to doctors to obtain conclusive answers to their questions, she added.

The forum was attended by ETS board members, a group of doctors specializing in thalassemia, blood diseases, bone marrow transplantation, gene therapy and dentistry as well as nursing staff, social workers, administrators and a number of thalassemia champions and families.

The forum, during which some success stories of thalassemia champions were displayed, discussed the needs of thalassemia patients and their expectations for the services provided to them.