emirates7 - Supporters from across the UAE gathered on 8th May evening 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, H.H. 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 often 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 H.H. 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 Thalassemia 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 Eleftheriou, 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 H.H. Sheikh Sultan Bin Khalifa Al Nahyan Foundation, calls for the intensification of concerted efforts and collective mobilisation by all related stakeholders to change that."
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, H.H. 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 often 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 H.H. 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 Thalassemia 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 Eleftheriou, 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 H.H. Sheikh Sultan Bin Khalifa Al Nahyan Foundation, calls for the intensification of concerted efforts and collective mobilisation by all related stakeholders to change that."