Thalassemia cases in the UAE have decreased by over 75% in the past two decades due to the dedicated work of the UAE Genetics Disease Association (UAEGDA), a non-profit organization led by its founder, Dr. Maryam Fatma Matar. The organization has focused on raising awareness about premarital screening for this genetic blood disorder and driving legislative changes in the country.
Dr. Maryam shared, “The prevalence of the disease was 12% in 2004. Today, it stands at 2.9%. This is a significant achievement for our NGO, which is the only organization in the Middle East represented in the Global Commission of Rare Diseases and partnered with the Harvard Genetic Institute since 2017.”
Speaking at the Future of Healthcare Conference, Dr. Maryam emphasized that this milestone was achieved through years of perseverance and overcoming resistance.
The Journey to Change: Starting Awareness in Tribal Areas
Though UAEGDA was officially established in 2004, Dr. Maryam’s mission began much earlier. In 2001, she visited the northern emirates, particularly Ras Al Khaimah, to educate people about genetic screening. She recounted the challenges faced when convincing tribal leaders, who were hesitant to allow women in their tribes to undergo screening.
Dr. Maryam recalled her visit to a tribe leader on a mountaintop. Using an analogy involving dates, she explained the importance of screening. “I asked him, if you see a date seed, can you identify its type? He said yes. I then told him that’s what we do—identify issues early. If one tree in your farm is diseased, what do you do? He replied that he removes it. I explained that we aren’t asking to remove people but to identify illnesses before they spread.”
By the end of the visit, her team screened 72 tribe members, although the leader prohibited publishing the results. This effort marked a turning point in spreading awareness of premarital screening.
The Impact of Premarital Screening
Premarital screening identifies carriers of haemoglobin disorders, helping prevent the birth of children with thalassemia. Such measures have proven instrumental in reducing the disorder’s prevalence in the UAE.
From Plastic Surgery Aspirations to Community Medicine
Dr. Maryam originally aspired to become a plastic surgeon but shifted her focus during her internship. Witnessing the suffering of families with thalassemia-affected children made her reevaluate her goals. “A search showed me that Cyprus had celebrated 11 years without new thalassemia cases due to legislation and awareness. That inspired me to change my specialty to community medicine.”
Dr. Maryam went on to become the first Emirati woman to serve as Undersecretary at the Ministry of Health. Her leadership has positioned UAEGDA as a cornerstone in reducing thalassemia rates and highlighting the role of NGOs in healthcare.
Looking Ahead: The Future of Healthcare
Dr. Maryam’s journey and achievements were showcased at the Future of Healthcare Summit, emphasizing the critical role NGOs play in addressing public health challenges. The summit brought together healthcare professionals to discuss future industry challenges and explore opportunities for growth.
