IN A BIG PRESS CONFERENCE, SCHS & ITS PARTNERS DISCUSS REPORTERS ABOUT "RARE SYNDROMES ASSOCIATED WITH DISABILITY"
On Thursday, January 19, 2023, Sharjah City for Humanitarian Services (SCHS) held a press conference at the headquarters of Sharjah Media City "Shams" to announce the organization of its international scientific conference "Rare Syndromes Associated with Disability". SCHS is organizing the scientific conference on February 27 and 28, under the generous patronage of His Highness Sheikh Dr. Sultan bin Muhammad. Al Qasimi, Member of the Supreme Council and Ruler of Sharjah, in partnership with the University of Sharjah and the Ministry of Health and Prevention, in the Student Forum Hall, at the Boys College - University of Sharjah.
Her Excellency Mona Abdul Karim, Director of SCHS and Chairman of the Conference, has confirmed in a speech she delivered that the conference is the first of its kind in the Arab world. SCHS attaches great importance to scientific and community outreach. It is keen to keep abreast of the latest and best global practices that will develop work and services provided to persons with disabilities in all fields. SCHS is confident that its conference on rare syndromes will represent a turning point in the region, contributing to the awareness of professional and medical staff about these syndromes, and ways to deal with them.
She said, “We gather today to discuss and explore together this field. We will shed light on an important segment of society that has never been addressed by any of the Arab institutions before. SCHS has always played an educational, informative and professional role in the field of disability. This time, SCHS will shed light on the rare syndromes. Despite the difficulty in counting the full number of people with rare syndromes in our Arab societies, SCHS has sought to provide them through the global census”.
Mona Abdel Karim explained the participation of 8 Arab and foreign countries in the conference, which are the United Arab Emirates, the United States of America, the Arab Republic of Egypt, the Kingdom of Saudi Arabia, France, the Republic of Tunisia, the Hashemite Kingdom of Jordan, and the State of Palestine. The conference includes four main themes: the "Medical", "Educational/Rehabilitation", "Family Counseling", and the "Art Therapy" theme, with the organization of three workshops. As for the participating working papers, they amounted to 27 papers, noting that 54 participants contribute to all the activities of the conference.
The director of SCHS indicated that modern countries follow correct approach by paying attention to people with rare syndromes. They establish centers and associations that looks after them. SCHS, through the conference, calls for emulating this approach in our region, and working continuously to improve the quality of life of people with rare syndromes and their families. It also urges the establishment of centers and associations that looks after them.
She stated that the percentage of students with rare syndromes is 3.88% of the total 1,647 students with disabilities who received special education services in SCHS from September 2021 to January 2023, with 64 students as total. This percentage shows the great importance that SCHS attaches to students with rare syndromes. It is noteworthy that 47 students with rare syndromes have already graduated from SCHS during the past years.
According to Mona Abdel Karim, the conference aims at raising awareness about the latest developments and medical, practical, educational and rehabilitative practices for people with rare syndromes to provide new knowledge and exchange experiences about educational and rehabilitation services for people with rare syndromes. In addition to improving the quality of life for people with rare syndromes and their families, unifying efforts and coordinating the services provided by different agencies for people with rare syndromes, identify solutions to some issues and difficulties by looking at some successful experiences.
Interest in studying the distinctive cognitive, behavioral, linguistic and educational aspects of these syndromes is one of the most important goals of the conference. This relates to SCHS's vision and goals in producing and disseminating modern knowledge at the local and global levels, supporting interest in the issues of persons with disabilities and their families without discrimination, and networking between the various agencies and institutions of educational, medical, social, economic and media. This would mobilize efforts to include, advocate and empower persons with disabilities.
At the end of her speech, the Director of SCHS thanked the partners in organizing the conference. They are University of Sharjah and the Ministry of Health and Prevention. Special thanks went to the sponsors of the conference, which are Sharjah Media City - Shams, Dragon Oil and Etisalat, and the media partner, which is Sharjah TV.
University of Sharjah Statement
After that, the presenter of the press conference, Mr. Saeed Butti Hadid, Executive of Corporate Relations at SCHS, invited Dr. Ahmed Falah Al-Amoush, Director of the Resource Center for Persons with Disabilities, to deliver a speech on behalf of His Excellency Dr. Hamid Majul Al-Nuaimi, Director of the University of Sharjah. Dr. Ahmed has highly appreciated His Highness Sheikh Dr. Sultan bin Muhammad Al Qasimi, Member of the Supreme Council and Ruler of Sharjah. He also payed great tribute to His Highness Sheikh Sultan bin Ahmed, Deputy Ruler of Sharjah and President of the University of Sharjah, for their comprehensive support, which clearly contributed to achieving the comprehensive empowerment of persons with disabilities at the academic and societal levels. Their Highnesses achieved for the Emirate of Sharjah a pioneering role and support for people with disabilities in the Arab world and internationally. Sharjah is a friendly emirate for people with disabilities.
He said, “The conference on rare syndromes associated with disability, which is one of the most important conferences in our Arab region, is part of a distinguished and unique series of conferences organized by SCHS”.
” The importance of this conference lies in the nature of its topic and objectives. SCHS seeks, in partnership with the University of Sharjah and the Ministry of Health and Prevention, to spread awareness of the latest and best Arab and international practices to support and rehabilitate people with rare syndromes. This reflects in the quality of their lives and the lives of their families. SCHS also seeks to strengthen partnerships and unify institutional and societal efforts to exchange scientific and practical experiences by hosting a group of specialists and practitioners around the world. This contributes to employing all of this in the lives of people with rare syndromes and their families”, added Dr. Ahmed.
The university works through this pioneering partnership with SCHS to provide all forms of care and support for people with disabilities. SCHS is an essential tributary for students with disabilities of all categories. The University of Sharjah completes their education according to a unified vision formulated by His Highness Sheikh Dr. Sultan bin Muhammad Al Qasimi, Member of the Supreme Council and Ruler of Sharjah. He ordered to provide all means of support for them in general and in university education through academic, psychological, social and technical support. Therefore, SCHS raises awareness of their issues and take all measures to achieve equal educational opportunities for them within the university. In turn, the University of Sharjah graduated a number of qualified students with disabilities with bachelors, masters or doctoral degrees.
He added, "The University of Sharjah's believe in the need to implement the rights approach, in order to implement international conventions and local laws, and to achieve the principle of equal opportunities. Thus, the University has sought to adapt all elements of the educational process to suit the needs of students with disabilities and to strengthen scientific and institutional partnerships".
Dr. Ahmed has confirmed that the conference comes as a practical application of scientific and societal efforts and leading global and local practices in the field of rare syndromes associated with disability. It is an important field that calls for more serious and sober scientific research from researchers specializing in the University of Sharjah, especially with regard to its educational and psychological aspects. These aspects receive attention disproportionate to their importance and lasting effects on the lives of individuals and families. The event aims to grant SCHS the leading role in addressing its various aspects and unifying scientific efforts in accordance with the conference multiple themes. It deals with all aspects of interest to researchers and families.
At the end of his speech, he extended his thanks and appreciation to Her Excellency Sheikha Dr. Jamila bint Muhammad Al Qasimi, President of SCHS, for her efforts on the humanitarian and institutional levels. These efforts had a great impact on including persons with disabilities in general, and facilitating the mission of the university in providing appropriate higher education for different groups including persons with disabilities in particular.
Ministry of Health and Prevention Statement
After that, Dr. Aisha Al Muhairi, Director of the Quality of Life Office at the Ministry of Health and Prevention, delivered a speech in which she emphasized the importance of the international scientific conference “Rare Syndromes Associated with Disability”. She referred to the prominent role of the conference in highlighting rare syndromes associated with disability and ways to deal with them, and raising awareness and knowledge among cadres and medical specialist, about the latest developments and medical, practical, educational and rehabilitative practices for people with rare syndromes. It aims at supporting national efforts to enhance the integration of this group into society and improve the quality of their lives and the lives of their families.
Dr. Aisha also praised the efforts of the SCHS and the humanitarian message that it faithfully carries in all activities and programs, as well as the appreciation of the global role of the University of Sharjah and its support for various activities. She drew attention to the importance of the cooperation with SCHS to achieve the noble, health and scientific goals of the conference. Organizers want to come up with practical recommendations that improve the quality of life for people with rare syndromes and their families.
The scientific committee
Mr. Mohamed Fawzi, Director of SCHS Early Intervention Center and a member of the scientific committee at the conference, has confirmed SCHS's keenness since its inception to provide everything new to the community. From this standpoint, it organizes an annual scientific conference. The conference this year is about rare syndromes associated with disability as a continuation of this approach.
He said, "To achieve this goal and attract the best and latest global practices, the institute has formed a scientific committee consisting of five people representing SCHS, the Ministry of Health and Prevention and the University of Sharjah. They all formed a homogeneous team to meet the needs and vision of the conference.
During the previous stage, SCHS announced receiving summaries of the working papers. About 74 applications for participation were received from 46 various parties from inside and outside the country and from 14 different countries. The committee worked during the last period on studying and filtering them. Then, SCHS requested participants for the complete papers, in order to choose the most suitable for the needs and the aspirations of the conference. Finally, the committee announced the final schedule of the conference.
Fawzy added, "The conference on rare syndromes associated with disability is rich in content, rich in expertise and experiences, in addition to its valuable themes, papers and workshops. An exhibition of assistive technologies with the participation of 8 specialized companies will accompany the conference".
The member of the Scientific Committee concluded his speech by expressing his hope that researchers seeking knowledge and experience in this field would find fertile ground in the conference through which they would draw knowledge and experience at the hands of global elite of competencies. They would gain a knowledge that they would reflect in the target groups.
Sharjah Media City (Shams)
Then Dr. Khaled Omar Al Midfa, Chairman of Sharjah Media City, delivered a speech in which he expressed his pride in the medical efforts made by Sharjah City for Humanitarian Services. He also expressed the happiness of Sharjah Media City, Shams, to be part of this great and inspiring humanitarian work through the support and sponsorship of the conference.
He said, “As we appreciate SCHS's relentless endeavor to keep abreast of scientific developments in the fields supporting humanitarian work, we pay special attention to the outcomes of this conference in terms of strengthening the presence of the Emirate of Sharjah in the humanitarian, medical and international community. Sharjah Media City "Shams" is a qualified and accredited place for people with mobility disabilities by the International Federation of Persons with Disabilities, and an age-sensitive institution by the headquarters of the age-sensitive Sharjah office".
He added, "From our position as a working party in the media sector, we participate with specialists, doctors, researchers, parents and workers in the humanitarian field, individuals and institutions, in realizing the importance of raising awareness about the latest developments and medical, practical, educational and rehabilitative practices for people with rare syndromes. We seek to provide new knowledge and exchange experiences in this field. We are aware of the importance of the role that the media can do in this field.
He concluded by saying that Sharjah Media City Shams, with its expertise, resources and capabilities in the media field, is fully prepared to meet the aspirations of providing all forms of support for this important conference. This contributes to the success of its work.
Dragon Oil Statement
Then Mr. Ahmed Bin Aboud, Chief Financial Officer, delivered a speech on behalf of the Executive Director of the UAE Dragon Oil Company operating in the oil and gas sector. He said that human beings in the UAE have been the focus of attention since its establishment by the founding leaders. Humans receive full care under the leadership of His Highness Sheikh Mohammed bin Zayed Al Nahyan, President of the State, and his brother, His Highness Sheikh Mohammed bin Rashid Al Maktoum, Vice President, Prime Minister and Ruler of Dubai, and His Highness Sheikh Dr. Sultan bin Muhammad Al Qasimi, Ruler of Sharjah, and their brothers, Rulers of the Emirates.
He added, "The Corona pandemic is one of the most prominent examples provided by the UAE to the world and not only to the people and residents of the country, but rather it went beyond that. We found that Emirati support reached most of the friendly and brotherly countries that were unable to provide the Corona vaccine to their people and provide other vaccines, in a situation that stopped all the activities of the world at all levels”.
He added, "UAE's initiatives are countless. Because we are an important part of the Emirati society, Dragon Oil is part of this society. Dragon Oil has sought to support many humanitarian and community initiatives locally and in the Arab world. The company plays an important role as part of its role in providing support towards social responsibility. Because we believe in the success of such international scientific conferences specialized in defining rare syndromes of disability, whose leadership is led by the SCHS, with the aim of educating individuals, families and the media on the importance of raising awareness of the developments and updates that occurred during the previous stages. It would support the rehabilitation of people with rare syndromes”.
He said, "Dragon Oil's role is not limited to its support for these types of purposeful scientific gatherings, but rather it is moving forward in implementing the visions of the strategies that it has set towards its social responsibility. Dragon Oil in Turkmenistan has established and built a private medical clinic in a remote village. It has also provided all equipment and medical supplies for providing special care for families, children, and people with disabilities who do not have access to treatment. Dragon Oil has built a mosque and a covenant for the memorization of the Holy Qur’an.
During the Corona pandemic, it also provided the Corona virus vaccine in Turkmenistan in light of the comprehensive closures witnessed by the world. In the Republic of Egypt, where Dragon Oil is carrying out drilling and exploration operations in the Gulf of Suez, it has spared no effort to provide suitable work for a number of persons with disabilities as part of its role to support this group of society.
This did not stop, as Dragon Oil contributed last year to being the main sponsor of the Zayed Marathon in Alexandria. Moreover, Dragon Oil supported scientific and research initiatives at Ain Shams University, which is one of the most important and oldest Egyptian universities, which had a major role in highlighting many numbers of educated people at all levels.
In conclusion, he highly valued the great role played by SCHS in adopting such qualitative and targeted initiatives. He extended his thanks and appreciation to Her Excellency Sheikha Jamila bint Muhammad Al Qasimi, President of SCHS. Special thanks went to organizers, participants and attendees of the conference.
Etisalat Statement
For his part, His Excellency Abdulaziz Hamad Tarim, Advisor to the CEO and General Manager of E&T in the Northern Emirates, indicated that the company continues to empower all segments of society, especially people with disabilities. It contributes to improving their quality of life.
He said, "Our sponsorship of the conference stems from the continuous efforts made by the company within the framework of social responsibility to give back to all segments of society and raise awareness of the rights of persons with disabilities. This conference represents one of the main pillars of support for people with rare syndromes”.
Tarim concluded by saying, "Complementing the role of Etisalat in providing the latest digital solutions and services in the communications and information technology sector, the company is working to enhance the role of technology in improving the lifestyles of individuals by adopting the latest technologies. In addition, it contributes to introducing the difficulties experienced by people with rare syndromes and contributing to finding solutions necessary to support them".