Feb 27, 2023

On Monday, Feb 27, 2023 His Highness Sheikh Dr. Sultan bin Muhammad Al Qasimi, Member of the Supreme Council and Ruler of Sharjah, has witnessed the launch of the activities of the international scientific conference "Rare Syndromes Associated with Disability" at the Student Forum Hall, at the Boys College - University of Sharjah. Sharjah City for Humanitarian Services (SCHS) organized the conference in partnership with the University of Sharjah and the Ministry of Health and Prevention.

The conference, which is the first of its kind, aims at shedding light on rare syndromes associated with disability and ways to deal with them. It also contributes to raising awareness among relevant medical personnel about the latest developments and medical, practical, educational and rehabilitative practices for people with these rare syndromes

The activities of the two-day conference began with the national anthem of UAE. Then, Ms. Mona Abdul Karim, Director of SCHS, delivered a speech in which she expressed her thanks and appreciation to His Highness the Ruler of Sharjah for sponsoring and opening the conference. The event sheds light on a group of society that did not receive the necessary attention and appropriate services such as education and rehabilitation. The conference emphasizes SCHS’s local, Arab and international role under the directives and follow-up of Sheikha Jamila bint Muhammad Al Qasimi, Chairperson of SCHS, through initiatives to introduce all that is new and benefit from experiences, and highlight the best international scientific practices in this field.

Mona explained the lack of studies and statistics on rare syndromes in the Arab world compared to western countries. This confirms the importance of the conference and the tendency to conduct scientific studies and research in this field. In addition to the importance of the existence of special associations concerned with each rare syndrome that provide medical, educational and rehabilitative services.

Regarding the proportions of people with rare syndromes in SCHS and the importance of the conference to provide the necessary support for them, the Director of SCHS said that the number of students with rare syndromes has increase in SCHS. They are now 67 persons, representing 4.06% of SCHS's total 1,647 students with disabilities. They receive the best and latest services within its departments and branches. Therefore, we realize the importance of this conference, which highlights the best practices and scientific expertise, whether local, Arab or international, which will contribute to providing the necessary support to families, as we consider the family a strategic partner in developing services provided to people with rare syndromes.

We hope that this conference will be a turning point in the methodology of dealing with rare syndromes associated with disability, and interest in scientific research to provide appropriate solutions about the challenges that some may face in relation to diagnosis and transferring experience and knowledge about the syndrome to families. Taking into account the psychological aspects of the family while receiving the news. We hope also that our conference will receive great interest from specialists working in the field of genetics, especially since there is a close link between the occurrence of the syndrome and heredity, and this is what the United Arab Emirates is seeking through the "Emirati Genome".

Dr. Hamid Majul Al Nuaimi, Director of the University of Sharjah, gave a speech in which he pointed out the importance of the conference in terms of the nature of its topic and its objectives. The event is a scientific precedent seeks to spread awareness of the latest and best Arab and international practices to support and rehabilitate people with rare syndromes.   This reflects on the quality of their lives and the lives of their families.

Al-Nuaimi explained that the university is working to strengthen partnerships with all societal agencies. He emphasized its pioneering role in serving society and humanity. The university has been working with SCHS in holding conferences, events and joint scientific projects. He stressed that the university worked to adapt all elements of the educational process to be compatible with the needs of students with disabilities.

Then, Dr. Hussein Abdul Rahman Al-Rand, Assistant Undersecretary for the Public Health Sector at the Ministry of Health and Prevention, delivered a speech in which he expressed his thanks and appreciation to His Highness, the Ruler of Sharjah, for his constant and continuous support for everything that enhances public health and empowers groups of society.

Al-Rand indicated that many professionals overlook rare diseases because they do not affect large numbers of the population and are not economically feasible. He stressed the entitlement of all individuals to treatment regardless of the type of disease, age, gender and social status, including those with rare disease syndrome associated with disability. They have the right to live a healthy life and receive the necessary support.

The Assistant Undersecretary for the Public Health Sector at the Ministry of Health and Prevention said, “The government of the United Arab Emirates pays great attention to improve the quality of life for all members of society, and to achieve the goals of sustainable development. The Ministry was keen to be a partner in this conference. The conference is of great importance because it shed light on these syndromes and ways to deal with them. It raises awareness among the relevant medical staff about the latest developments and medical, practical, educational and rehabilitative practices for people with these rare syndromes”.

During a speech during the ceremony, Dr. Ahmed Hassan Al-Awadi, Director of the UAE Genome Program, explained that the country's efforts are continuing in many scientific and technological fields to deal with all challenges through scientific and proactive research.

Al-Awadhi said, "The UAE Genome Program is a national research project that aims to develop a genetic map for UAE citizens. It aims at accelerating the development of healthcare, preventive and specialized care solutions, using the latest genetic sequencing technologies and artificial intelligence. It is the latest program of its kind in the region and places the country as a research and innovation center in the field of genomics.

The director of the UAE Genome Program pointed out that the program aims to give researchers, doctors, scientists an opportunity to learn about genetic causes, the type of genetic mutations, anticipate susceptibility to some diseases, and study them in a deeper way in preparation for developing treatment and preventive plans.

During the ceremony, the attendees watched a video material about the most important services provided by SCHS to people with rare syndromes. SCHS provides services with the latest means and in an appropriate environment commensurate with the cases and services provided to them and contribute to helping them and their families to adapt and develop their skills and abilities.

The audience also watched a film entitled "A Turning Point", which narrates the story of the student Abdul Rahman Fayrouz Obaid, who suffers from SMMCI Syndrome. The early discovery of his condition, made him join SCHS. He benefited from various therapeutic and educational services and Assistive Technologies. He has diligence and great ambition, which contributed to obtaining many awards, adaptation and integration into society.

At the conclusion of the opening ceremony of the conference, His Highness the Ruler of Sharjah took a souvenir photo with the sponsors and partners from government and private institutions.

On the sidelines of the conference, His Highness the Ruler of Sharjah toured the Assistive Technology Exhibition, which SCHS holds as part of the conference. It presents the latest assistive technologies to deal with different types of disabilities.

His Highness listened to an explanation about the items included in the wings of the exhibition. It aims to raise awareness of the various types of Assistive Technology, and reach the largest number of beneficiaries to support their independence in daily life activities, raise the level of their skills, support community participation, as well as raising awareness of the facilities for financing technical solutions for beneficiaries, support and promote partnerships with local and international companies.

SCHS organized the conference by hybrid system, face-to-face and virtually. It discusses four themes: the medical, educational, rehabilitative, family counseling, and art therapy. It includes 86 participants of 98 lecturers from 63 institutions and bodies in 17 countries that were arbitrated by a specialized scientific committee that included doctors and specialists in the medical and educational fields and rehabilitation.

The conference targets workers in the field of special education, associations, medical and specialized centers, doctors of various specialties and workers in the medical professions. It also targets families of people with rare syndromes, researchers and graduate students in universities and research centers concerned with disability research, members of the media and arts sector in all its branches. In addition to leaders in institutions and disability agencies.

The launch of the conference activities, alongside His Highness the Ruler of Sharjah, was attended by: Dr. Abdulaziz Saeed Al Muhairi, Chairman of the Sharjah Health Authority, Muhammad Obaid Al Zaabi, Head of the Protocol and Hospitality Department, Tariq Saeed Alai, Director General of the Media Bureau of the Sharjah Government. Abdulaziz Tarim, Director General of “Etisalat from e&” in the Emirates Al Shamaliya, Shehab Ahmed Al Hammadi, Director of Sharjah Media City "Shams", and a number of senior officials and specialists were present as well.