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.
