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The 1st international UAE Rare Diseases Society Congress Kicks off Under the ‎Patronage of the Sheikh Hamdan bin Rashid Al Maktoum Award for Medical ‎Sciences 25 February 2023
Under the patronage of the Sheikh Hamdan Bin Rashid ‎Al Maktoum Award for Medical Sciences, the activities of the first international ‎UAE society Rare Disease Society Congress kicked off at the Intercontinental ‎Festival City Hotel. The opening activities took place in the presence of H.E. Dr. ‎Abdullah Al Khayat, Member of the Award's Board of Trustees and Cheif executive ‎officer of Al Jalila Children's Hospital and Vice Chairperson of the Board of ‎Directors, and H.E Abdullah Bin Souqat, Executive Director of the award. Also ‎present were a group of specialists in the field of genetic and genetic diseases.‎
During his speech Dr. Abdullah Al Khayat said, "For the Sheikh Hamdan Award for ‎Medical Sciences, sponsoring this conference is a continuation of our efforts for ‎more than ten consecutive years; from our first awareness campaign on rare ‎diseases through a series of activities for different groups in the UAE, and the ‎issuance of specialized scientific reports and research from the Centre for Arab ‎Genomic Studies to the support provided for the establishment of the Emirates ‎Rare Diseases Association. Here, we are witnessing the opening ceremony of the ‎first conference organized by the Society under the patronage of the Award."‎
Talking about the Al Jalila Children's Hospital, he said, "The hospital is proud ‎to be one of the first regional institutions to establish a successful program for ‎the treatment of rare diseases through the Genome Centre, which is one of the ‎most important centres of excellence in the hospital, in addition to other ‎multidisciplinary teams that use the latest gene therapies and rapid complete ‎genome sequencing to diagnose critical cases of intensive care unit patients. ‎This work resulted in the selection of the Genome Centre at Al Jalila Children's ‎Specialty Hospital for the Hamdan award for outstanding clinical department ‎work in the public sector in UAE in 2022", he added.‎
‎ Dr. Fatma Al Jasmi in her speech, said that more than 7,000 rare diseases ‎have been identified so far. Although rare disease is defined as affecting less ‎than 1 in 2,000 people, in fact the figures show that about 6% of the world's ‎population suffers from a rare disease, which justifies its spread as a group.‎
She pointed out that studies have shown that rare diseases as a group affect ‎one in 17 people. There are approximately 300 million people with 13 rare ‎diseases.‎
The Centre for Arab Genomic Studies of the Sheikh Hamdan Bin Rashid Al ‎Maktoum Award (August 2021) reported that the Center's CTGA database reports ‎‎1,823 diseases, and 2,442 genetic mutations in 1,488 genes in Arabs. This ‎underlines the importance of developing genetic testing and treatment for these ‎incurable diseases, and this can only be achieved through the joint efforts and ‎cooperation of medical researchers, scientists, health care professionals, funding ‎agencies, companies, policymakers, and patients themselves, she added.‎
Ms. Nafisa Tawfiq, Chairman of the Emirates Rare Diseases society, and a member ‎of the organizing committee of the conference and the Director of the family ‎session, said that the conference program will cover a wide range of topics in the ‎field of rare diseases with the participation of specialists from different countries ‎of the world, through presentations and workshops. The conference will also ‎educate, motivate and inspire rare heroes and their families through their ‎participation in their experience with the disease, while providing opportunities to ‎discuss with decision makers about the challenges they face directly as well as ‎discuss solutions to improve the quality of life.‎
It is worth mentioning that more than 28 international experts and 55 specialized ‎doctors from inside the country will participate in the conference, who will discuss ‎in 75 sessions the best diagnostic and therapeutic methods and examinations for ‎patients, as well as reviewing the latest medicines and treatments for the ‎treatment of rare diseases. The conference is also a unique opportunity to ‎exchange information and knowledge and learn about the latest studies and ‎advanced technology in the rare diseases.‎