Shifa, an 11-year-old girl from the UAE, has a rare medical condition called Propionic Acidemia. It is a disorder affects nearly one in 75,000 people around the globe and is known to be far more prevalent in the Arabian Peninsula. Shifa's case was highlighted in a booklet published by the Sheikh Hamdan bin Rashid Al Maktoum Award for Medical Sciences on the occasion of Rare Disease Day.
A rare disease, sometimes referred to as an "orphan disease", is any health condition that affects a small percentage of the general population. According to Rare Disease UK (RDUK), an estimated one in 17 people, or seven per cent of the population, will be affected by a rare disease at some point in their lives. This equates to approximately 550,000 people in the UAE. Medical science is currently aware of some 8,000 rare diseases, with nearly five new ones finding mention in medical literature every week. Eighty per cent of the diseases have a genetic component. Alarmingly, approximately 75 per cent of the population affected by rare diseases are children, 30 per cent of whom die before the age of five.
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Tackling rare diseases, and finding preventative solutions and cures, can be a time-intensive process, requiring niche specialisations and extensive research that often involve a leap into the unknown, as well as a leap of faith in terms of investment. Innovation is crucial here. Scientists need to become more creative and leverage the best tools available to gain in-depth insights into rare diseases with a view to defeating them.
It becomes imperative therefore to match scientists with organisations that enable them to maximise their capabilities and generate the best possible outcomes. Industry-focused initiatives that bring together like-minded professionals and facilitate their cooperation for the wider benefit of the community, the country and the world at large are in prime position to make a real difference in the global fight against rare diseases.
Located at the crossroads of the diverse lands that make up the MEASA region, Dubai is a hub for thousands of professionals from every corner of the world. Blending diverse schools of thought, the city is producing groundbreaking work in the realm of medical innovation. Some of these homegrown solutions have the potential to cure rare diseases and improve the lives of people in the UAE and across the wider region.
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As the region’s first science-focused community that provides scientific expertise, R&D and cutting-edge facilities all under the same roof, Dubai Science Park makes significant contributions to the fight against rare disease syndrome.
As part of a memorandum of understanding signed between Dubai Science Park and Sanofi, the global healthcare leader, we are striving to enhance awareness of rare diseases in the Middle East, and assess their impact on residents and citizens in the UAE. We are also working to build a stronger communication network among industry players and stakeholders focused on rare diseases. We believe this will help further enhance knowledge and technical capabilities within the industry through the sharing of best practices and case studies.
In all that we do, we draw our mandate from Dubai Plan 2021, Dubai Industrial Strategy 2030, and the UAE's National Strategy for Innovation that call upon us to create an environment for life sciences companies within the country to thrive. The Dubai Science Park's provision of office space, state-of-the-art laboratories and warehousing facilities that meet the requirements of businesses and professionals in the science sector, equipping them to undertake work to advance scientific research, has resulted in 350 scientific entities to commence path-breaking work at the facility.
This, however, is only the beginning. Our goal as a science hub is to help our community grow and expand its reach to benefit more people worldwide. Whether it is through scientific research or initiatives to raise awareness and educate our societies, we hope to take a multidisciplinary approach to cover the many different aspects of life that are affected by rare disorders.
With the concerted efforts of like-minded stakeholders in the region and the wider marketplace, the Dubai Science Park is confident of ensuring a healthier tomorrow for children like Shifa. We are keen to alleviate the painful journey of those impacted by rare diseases and their loved ones, to ensure that they do not become untold stories behind the closed doors of their homes or hospitals.
Marwan Abdulaziz Janahi is Executive Director of Dubai Science Park and the Chairing Member of the Pharmaceutical and Medical Equipment Taskforce of the Dubai Industrial Strategy 2030
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