By H.E. Dr. Maryam Mohamed Fatma Matar, Founder and Chair, UAE Genetic Diseases Association (UAEGDA)
In every global conversation on sustainability – from Davos to COP – we speak of renewable energy, circular economies, and climate resilience. Yet the most powerful renewable resource of all is a healthy population. No nation can truly thrive if its people are diminished by diseases that could have been prevented. This truth has guided my life’s work – and it started with a very simple, somewhat rebellious question back in 2005: “Why are we still treating genetic diseases that we already know how to prevent?” At the time, Thalassemia Major affected 1 in every 12 Emiratis as carriers, and every week a new child was born needing lifelong blood transfusions and expensive chelation therapy. Physicians called it “inevitable.” I called it unacceptable.
So, with zero budget, and a borrowed room in Al Wasl Hospital, I founded the UAE Genetic Diseases Association – the region’s first 100 % volunteer-driven movement against preventable genetic disorders. Our first “office” was the hospital cafeteria after closing hours. Our first “fundraiser” was selling homemade cupcakes at school fairs. True story: the lemon flavour sold out fastest – apparently even geneticists bake with love.
Within months, something extraordinary happened. Doctors from Pakistan, India, Egypt, the Philippines, the UK and Jordan started showing up after their shifts – not for money, but because they believed no child should suffer when science already had the answer. Nurses translated brochures into Urdu, Malayalam, Tagalog, and Arabic dialects.
Mothers who lost children to genetic diseases became our most powerful volunteers, standing in wedding halls gently asking, “Have you done the premarital test yet?” Their multi-cultural energy turned a cupcake-funded dream into five federal laws, the virtual eradication of new thalassemia cases and the dramatic decline of other severe genetic disorders.
Today, the UAE has one of the lowest rates of haemoglobinopathies in the world-a miracle built not by oil wealth, but by volunteer hearts from over 100 nationalities. Fun fact: In 2011, when the premarital screening law went nationwide, some young couples jokingly complained that “Dr Maryam ruined our surprise engagements!” My reply? “Better a surprise blood test than a lifetime surprise of illness”. They usually laughed-then booked the test.
Zayed Sustainability Prize
This same inclusive, volunteer-powered spirit now fuels my seven consecutive years’ service on the Selection Committee at the Zayed Sustainability Prize. Every year, I read hundreds of entries, asking the same question I asked in that hospital cafeteria: “Does this solution reach the mother in the village who has never seen a doctor? Does it speak her language – literally and figuratively? “