Dubai-3rd of February 2019: The UAE Rare Disease Society concluded its awareness campaign on rare diseases, which was organized in collaboration with the Sheikh Hamdan Bin Rashid Al Maktoum Award for Medical Sciences. The campaign was organized across various regions in the country, including Sharjah, Ras Al Khaimah, Umm Al Quwain, Abu Dhabi, Fujairah, Al Ain, Dibba Al Hasn, and Hatta throughout February 2019.
Mr. Meshaal Al Hammadi, Chairman of The UAE Rare Disease Society, praised the success of the campaign, which began its events through the symposium on treatable rare diseases, which lasted for two days, at the Dubai Lapita Dubai Parks and Resorts in Dubai.
The 2019 Rare Disease Day continued at various levels as educational methods were included through school competitions and lectures, in cooperation with the Ministry of Education and Knowledge Authority in Dubai, as well as the Department of Education and Knowledge in Abu Dhabi (ADIC). Private schools were included for the first time in the 2019 annual schedule to educate all students in the country on rare diseases.
Competitions were held aimed at research to identify the nature of rare diseases through competitions and activities, which included school radio and Art works, said Al Hammadi.
School lectures were provided at 22 public and private schools across the UAE. The focus was on schools in remote areas such as Hatta, Dibba Al Hasn, Masafi, and others. The awareness lectures, delivered by by a group of female geneticists, including Dr. Fatima Al Bastaki, Board Member of the UAE Rare Diseases Society, Dr. Amal Al-Taniji, Board Member, Dr. Fatima Al-Jasmi, Dr. Nha Al-Zaabi, Member of the Society, and Dr. Noura Al-Dhahiri, Member of the society, benefited about 1,250 students. The lectures were highly appreciated by students, faculty, and parents.
Events of the rare diseases day ended with the Family Day gathering, which was organized by the Society at Children’s City, Creek Park in Dubai. This event showcased a rich program that included many entertainment activities for children, as well as listening to parents who told their stories about the challenges they faced in dealing with the rare diseases of their children. The ideal families that keep up with their injured children were also honored and the ideal heroine and ideal mother were honored.
The winners of the rare diseases day competition were also announced. The winner of the first place was Juwairiya Bint Al Hares School for Basic Education in Fujairah, while the second place was won by Marisheed School for Girls in Fujairah. The third place was won by Tarim American Private School - Secondary School in Sharjah. The best art work prize was awarded to Hala Abdul Salam from Queen's School in Dubai, and the winning story was Shaden Maher’s (Al Manara Private School Abu Dhabi) story entitled, "Whom I guarantee".
Dr. Fatima Al Bastaki, Consultant Pediatrics, and Clinical Genetics, Member of the Board of Directors of the Society and Chairman of the Organizing Committee for Events, thanked the Sheikh Hamdan Award for Medical Sciences, Government agencies, private companies, and individuals that supported the Society until its objectives are achieved. These objectives include the education of community members as well as those with rare diseases and their families, contribution to the provision of psychological support, moral and social them as well as awareness and the definition of rare diseases, raising of awareness among health professionals and researchers in the UAE community.
"Patients and their families need to feel that they are not alone, but that the entire community, individuals and institutions, are beside them for their support and support," she said.
“We have been celebrating the International Day of Rare Diseases since 2011, but this year our celebration has another flavor because the campaign has been organized for the first time by the UAE Rare Disease Society”, Dr.Fatma added.
Abdullah Bin Souqat, Executive Director of the Sheikh Hamdan Bin Rashid Al Maktoum Award for Medical Sciences, expressed his happiness with the remarkable success of the campaign. He praised the role of all those who organized this event throughout February with the aim of spreading the importance of awareness of these diseases, and how to address them and prevent them through early detection, and prenatal examinations.
The ceremony concluded with the honoring of the sponsors, headed by the Ministry of Education, Dubai Municipality, Dubai Police, Creek Park, Children’s City, National Archives, Dubai Sports Council, the Union cooperatives, the Society for the vision of the family, the global village. The pianist Osama Abdel Salam and the painter Fatima Al Muhairi were also honored for their support.
