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.‎