Prevention and education are the key to managing genetic disorders, says Dr Mariam Matar

UAE Genetic Diseases Association and Bourn Hall Fertility Centre step up efforts towards awareness among UAE community

  • Economic impact of prevention-based approach will give the highest returns in the long run
  • Genetic testing is the key to improving the quality of genes in consanguineous marriages

According to the World Health Organisation, the most cost-effective strategy for reducing the burden of genetic disorders is to complement disease management with prevention programmes.

“We strongly believe that prevention is the key to reduce the impact of genetic disorders, socially and economically, and is a long term sustainable solution, especially in a country like ours where close to 60% of population is under 30 years of age,” said Dr. Mariam Matar, Founder and Chairperson, UAE Genetic Diseases Association.

Dr Matar added: “Community outreach and prevention is one of the best investment we can make, and it will give best returns when you consider the economic impact of screening vs managing the disorders among the UAE population. For example, the cost of genetic screening of Thalassemia is AED 120 and the cost of treating a patient is AED 35,000 per annum. Another example is Neural tube defects, another common genetic disorder of the brain, spine, or spinal cord of new born babies. While a course of Folic Acid – which is the most recommended tool to reduce the risk – costs less than AED 30, management of one case of Neural tube defects will cost approximately AED 2,700, 000”.

In 2017, UAE GDA continues to work on empowering high risk groups and community with prevention tools which are affordable and accessible. Together with Bourn Hall Fertility Centre (BHC) several community outreach program will help to improve quality of life for patients and their families.

“Bourn Hall is proud to support UAE genetic Diseases Association’s vision and UAE Government’s agenda to lower the number of genetic disorders in the country. It’s a privilege to be chosen as the preferred partner for the cause by the association and as part of the program, our fertility center will continuously create educational forums, events as well as research opportunities in the field of genetics and infertility. Year 2017 is being marked as the Year of Giving by UAE and through our partnerships with UAE Genetic Diseases Association and Dubai Endowment Authority we are able to support the locals by offering discounted and in some cases free IVF cycles while giving them easy access to our IVF specialists helping them to start healthy families”, said Hoda Abou Jamra, Group CEO of Bourn Hall International.

“Genetic testing is the key to improving the quality of genes in a society where consanguineous marriages are common. It is recommended for those with family history of chromosomal abnormality of any single gene disorder, recurrent pregnancy losses, implantation failures, unexplained infertility, advanced maternal age or male factor infertility. Couples who have had an earlier child with an abnormality, could diminish the risk of having the second child with a similar abnormality”, said Dr. David Robertson, Group Medical Director at Bourn Hall Fertility Centre in Dubai.

Recent estimates indicate that there may be more than 400 genetic disorders in UAE.

UAE Genetic Diseases Association (UAEGDA), the national level body has been working on identifying the most common genetic disorders in the UAE since 2004 and has supported the leading health authorities to develop the necessary legislations for screening. According to UAE GDA, the most common genetic disorders in UAE include thalassemia, sickle cell anaemia, haemophilia, G6PD deficiency and cystic fibrosis.