Families, support groups and members of the community gather at Dubai’s iconic landmark as it is lit up in support of the UAE’s thalassaemia patients and their loved ones
Supporters from across the UAE gathered on the evening of May 8th at the 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 carrying a message of support and solidarity for thalassaemia patients, promoting awareness and improving the understanding of thalassaemia.
International Thalassaemia Day is a global observance organised by the Thalassaemia International Federation (TIF), encouraging the global community to work together as one to improve knowledge and care around the disease that impacts over 80 million people worldwide[1].
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, HH Sheikh Sultan Bin Khalifa Al Nahyan Humanitarian & Scientific Foundation & 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 characterized by the production of 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 serious 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.[2]
In recent years, the UAE government has made significant efforts to increase understanding of the need to identify the thalassaemia carrier population and enhance the disease care. However, the disease continues to present a significant burden on patients, healthcare services and society at large, highlighting the ongoing need for continued public awareness, promotion of prevention programs[3] and enhanced access to innovative care.
Dr Mahmoud Talib, Executive Director of HH Sheikh Sultan Bin Khalifa Al Nahyan Foundation said: “Our Foundation is an extension of the vision of H.H. Dr. Sheikh Sultan Bin Khalifa Al Nahyan, and one of 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, with a particular focus on thalassaemia. Thanks to scientific advances and the selfless efforts of patients, their families and medical experts, the quality of life for thalassaemia patients has improved greatly in recent years. We created the Sultan Bin Khalifa International Thalassemia Award, in partnership with the TIF, to recognize and celebrate those who have made enormous progress in improving access to care and to bringing thalassaemia to the forefront of the political and health agendas at local, regional and global levels.”
Mr. Abdul Basit Merdas, Vice Chairman of the Board of Directors of the Emirates Thalassemia Society said: “On this day, we raise the level of awareness and knowledge of thalassemia, and we extend our thanks and gratitude to the leadership of the United Arab Emirates for their continuous support to thalassemia 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 Regional TIF Collaborating Office, under the HH Sheikh Sultan Bin Khalifa Al Nahyan Foundation calls for the intensification of concerted efforts and collective mobilization by all related stakeholders to change that.’’
Oscar Delgado, General Manager – Middle East & Africa, Bristol Myers Squibb said, “At Bristol Myers Squibb, we are proud to help and support the needs of those living with thalassaemia in the UAE. Our company is committed to not only raising awareness of the disease and supporting the scientific advancements in the UAE, but also to investing in medical breakthroughs and discoveries that can transform patients’ lives.
We believe in the power of science to address some of the most challenging diseases and areas of unmet medical need, where medical innovations can help patients prevail over serious diseases.
Our aim is to work with different stakeholders to make a difference and continue UAE’s vision in being a regional leader for healthcare.”
[1] Beta-thalassemia – PMC (nih.gov)
[2] Anemia Institute for Research & Education and Thalassemia Foundation of Canada. Guidelines for the Clinical Care of Patients with Thalassemia in Canada. Available at: http://www.thalassemia.ca/wp-content/uploads/Thalassemia-Guidelines_LR.pdf. Accessed September 9, 2020.
[3] Al-Gazali L, Alwash R, Abdulrazzaq Y. United Arab Emirates: Communities and community genetics. Public Health Genomics. 2005;8(3):186–196. 10.1159/000086764
