First International UAE Society for Rare Diseases Congress Recommends Premarital and Newborn Genome Screening for Prevention of Rare Diseases
28 February 2023
The first International UAE Society for Rare Diseases concluded at the end of two days of activities, in which 80 speakers presented 23 lectures and 9 workshops. The conference received 46 hours of continuing medical education credit hours approved by the Ministry of Health and Prevention and the Department of Health - Abu Dhabi.
The conference recommended the need for cooperation in scientific research between the State and international universities to diagnose and treat rare cases, utilize artificial intelligence technology in the early diagnosis of rare diseases, work on the use of genome screening in the prevention of rare diseases through premarital and newborn assessment for early diagnosis, work to establish an association of scientists and geneticists for the Arab world, and attract clinical research to the UAE so that patients can obtain early treatment.
Dr. Fatima Al Jasmi, President of the conference and a member of the Board of Directors of the Society, stated that although there are many rare diseases that have no cure, and many of these disorders have not been researched well so far, there are also hundreds of diseases that are cured, thanks to the availability of many modern medicines and treatments that have been discovered recently. Talking about the prevalence of rare diseases in the Middle East region in general, and in the UAE, about 669 rare and hereditary diseases have been detected since 2003, as a result of the State's interest in limiting these diseases and providing appropriate treatments for them. She stated that according to the statistics of the World Health Organization, there are 7,000 genetic diseases affecting about 457 million patients around the world, and the latest studies indicate that 80% of rare diseases are due to genetic causes. About 30% of children with rare diseases die before reaching the age of five, while nearly 40% of people with rare diseases are forced to leave their areas of residence and go to other cities in search of appropriate treatment. The European Organization for Rare Diseases has designated February 28th of each year as World Rare Disease Day, in order to highlight the situation of different people who suffer directly or indirectly from the consequences of these diseases.
It is worth noting that agreements of cooperation were signed on the sidelines of the conference between the Emirates Society for Rare Diseases, Bassma Association for Supporting People with Rare Diseases and the Saudi Society for Genetic Medicine. A cooperation agreement was also signed between the College of Medicine and Health Sciences, United Arab Emirates University, and Nanopore Company in the field of practical research to diagnose rare undiagnosed diseases.
In conclusion, it was announced that the second edition of the conference will be held next year on February 29th, 2024. The activities of the family entertainment day in Dubai Safari Park, on March 4th were also announced.
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