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To mark International Thalassemia Day, global pharmaceutical company Bristol Myers Squibb has joined forces with the Thalassemia International Federation and several UAE entities to raise awareness of the disease.
These entities are the UAE Association of Genetic Diseases (UAEGDA), the Sheikh Zayed Center for Genetic Research and the UAE Thalassemia Association. The campaign aims to support patient communities and empower society through prevention tools under the theme of “Attention.” share. care. ‘
The International Thalassemia Federation (TIF) organized International Thalassemia Day on May 8 to encourage the international community to work together to improve awareness and care for a disease that affects more than 80 million people worldwide.
genetic disease
Thalassemia is an inherited blood disorder characterized by the production of abnormal forms of hemoglobin, the protein inside red blood cells that the body needs to carry oxygen. The disease can cause anemia and other conditions, such as bone abnormalities and growth defects.
Patients with thalassemia often require lifelong red blood cell transfusions and treatment regimens to support average growth and development, maintain quality of life, and increase life expectancy. A small percentage of patients recover fully with allogeneic bone marrow transplantation.
To raise awareness of the disease and support Thalassemia Warriors, Bristol-Myers Squibb is also partnering with several content creators in the region, including Zahra Lari, the first Emirati figure skater and content creator, to raise awareness about the disease. Disease Awareness and Celebration of Thalassemia Warriors. In Egypt, the company partnered with film star and UNFPA Ambassador Emeritus Amina Khalil, who shared a video with her Instagram followers , to raise awareness of the disease. In Saudi Arabia, the company partnered with UNDP Goodwill Ambassador and content creator Muna Abu Sulayman, who shared critical thalassemia information with her Instagram followers.
global challenge
Thalassemia is a global challenge and is prevalent in the Middle East and North Africa region. Dr. Maryam Mattar, Founder and President of the UAE Association of Genetic Diseases, highlighted the UAE’s efforts and success stories in addressing this issue, saying: “With the support of the UAE government, the cooperation of government authorities and the active participation from more community members With more than 200 countries participating in programs designed to provide communities with early detection, treatment and prevention tools, we reduced the prevalence of thalassemia from one birth per week in 2004 to one every two years in 2016 Son.
“These programs started in 1998, and mandatory screening for thalassemia was mandatory before receiving marriage grants from civil marriage grants. In 2001, I had the honor of participating in the national movement to reduce thalassemia, and cooperated with relevant departments to pass the pre-marital screening law The Sheikh Zayed Center for Genetic Research conducted the first field survey of 11,282 Emiratis aged 18-28 in 2007 to examine hereditary blood disorders in the country. We documented the true In this case, their percentage was 2.9%. To promote prevention, mandatory premarital examinations were approved in 2007, accredited first trimester testing centers and cord blood banking centers were established, and more than 5 UAE citizens underwent bone marrow transplants through stem cells extracted from umbilical cords And make a full recovery.”
Abdul Basit Merdas, Vice Chairman of the Board of Directors of the Emirates Thalassemia Association, said: “We are proud to partner with Bristol-Myers Squibb on International Thalassemia Day. Through this partnership, we will work together to achieve our common goal of raising awareness and improving Quality of life for people with thalassemia. Together we can increase our efforts to provide better care and support for those affected by this disease and ultimately make a positive difference in the lives of individuals and families affected by thalassemia Influence.”
care gap
Dr Androulla Eleftheriou, Executive Director of Thalassemia Federation International (TIF), said: “As we mark International Thalassemia Day, we must recognize the urgent need to close the thalassemia care gap through education and awareness. We have chosen to be mindful. Share Caring: Strengthening education to close the thalassemia care gap” is the theme of this year’s International Day. In the Middle East, 1 in 12 people who carry the thalassemia gene are affected, a situation that poses a major public health challenge to the region. However, through targeted advocacy initiatives like these, we can improve early detection and timely intervention, ultimately saving lives and reducing the burden of thalassemia on families and healthcare systems. In the Middle East and North Africa, we are delighted to be working with Bristol Myers Squibb on a series of campaigns in the UAE, Saudi Arabia and Egypt. Together we are committed to improving the lives of individuals and families affected by thalassemia through advocacy, education and access to quality healthcare. “
Oscar Delgado, General Manager Middle East and Africa, Bristol Myers Squibb said: “We are committed to supporting the needs of people with thalassemia and their families in the region. On this International Thalassemia Day, we want to further highlight the impact of this disease on individuals, families and healthcare in the Middle East significant burden on the health care system. We will continue to help close the thalassemia care gap through strategic partnerships and initiatives to improve access to quality care and raise awareness of the disease. Working together, we can provide healthcare professionals with , families and individuals with the knowledge and resources needed to effectively manage thalassemia.”
The UAE government has made significant efforts to increase screening, access and raise awareness of the need to identify thalassemia carrier populations and enhance care for the disease. The UAE has launched a nationwide pre-marital screening campaign, which has been mandatory for all couples planning to marry since 2007. The disease continues to place a heavy burden on patients, healthcare services, and society, underscoring the ongoing need for ongoing public awareness, prevention programs, and increased access to innovative care. — trade arab news agency
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