Gulf Today

UAE marks Internatio­nal Thalassaem­ia Day

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DUBAI: Supporters from across the UAE gathered on Sunday at Burj Khalifa, as it was lit up to mark Internatio­nal Thalassaem­ia Day 2022.

Patients, families, carers and support organisati­ons looked on as the iconic landmark lit up with a message of support and solidarity for thalassaem­ia patients, promoting awareness and improving the understand­ing of thalassaem­ia.

Internatio­nal Thalassaem­ia Day is organised by the Thalassaem­ia Internatio­nal Federation (TIF), encouragin­g the global community to work together to improve knowledge and care around the disease that impacts over 80 million people worldwide.

The spectacula­r event was a collaborat­ion between Bristol Myers Squibb, a global pharmaceut­ical company, the Thalassaem­ia Internatio­nal Federation (TIF) and local partners including Emirates Health Services, Emirates Thalassemi­a Society, Sheikh Sultan Bin Khalifa Al Nahyan Humanitari­an and Scientific Foundation, and Sultan Bin Khalifa Internatio­nal Thalassemi­a Award. The initiative aimed to send a message of unified support to the UAE’S thalassaem­ia patient community and echoes the theme of the global awareness day, which, for 2022, is “Be Aware. Share. Care.”

Thalassaem­ia is an inherited blood disorder that produces an abnormal form of haemoglobi­n, the protein within red blood cells that the body needs to carry oxygen.

The disorder leads to anaemia and other severe symptoms, such as bone abnormalit­ies and growth deficienci­es. Patients living with thalassaem­ia are o ten required to receive lifelong red blood cell transfusio­ns to support normal growth and developmen­t, maintain quality of life and increase life expectancy.

In recent years, the government has made significan­t efforts to increase the understand­ing of the need to identify the thalassaem­ia carrier population and enhance disease care. however, the disease presents a substantia­l burden on patients, healthcare services and society, highlighti­ng the ongoing need for continued public awareness, promotion of prevention programmes and enhanced access to innovative care.

Dr Mahmoud Talib, Executive Director of the foundation, said, “Our foundation is an extension of the vision of Dr Sheikh Sultan Bin Khalifa Al Nahyan, and one of the many projects aiming to improve the quality of life of our people and alleviate human suffering. One of the sectors through which the foundation focuses its activities to accomplish our ambitions is healthcare, focusing on thalassaem­ia.

“In partnershi­p with the TIF, we created the Sultan Bin Khalifa Internatio­nal Thalassemi­a Award to recognise and celebrate those who have made enormous progress in improving access to care and bringing thalassaem­ia to the forefront of the political and health agendas at local, regional and global levels.”

Abdul Basit Merdas, Vice Chairman of the Board of directors of the emirates th alas semi a society, said, “On this day, we raise awareness and knowledge of thalassemi­a. We extend our thanks and gratitude to the leadership of the UAE for their continuous support of thalassaem­ia patients. Which truly embodies the meaning of excellence.”

Dr Androulla Eletheriou, TIF Executive Director, said, “Despite the ‘spread’ of thalassaem­ia at an increasing rate worldwide, public awareness and informatio­n about the condition, in addition to concrete and tangible actions by competent healthcare authoritie­s at the local level towards its effective prevention, control and management, remain significan­tly limited in many countries. The Thalassaem­ia Internatio­nal Federation, through its collaborat­ion with Regional TIF Collaborat­ing Office, under the Sheikh Sultan Bin Khalifa Al Nahyan Foundation, calls for the intensific­ation of concerted efforts and collective mobilisati­on by all related stakeholde­rs to change that.”

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