Under the patronage of the Sheikh Hamdan bin Rashid Al Maktoum Award for ‎Medical Sciences, the UAE Rare Diseases society is organizing the first International ‎UAE Rare Disease Society Congress. The meeting will be held from the 25th to the ‎‎26th of February at the InterContinental Hotel Dubai Festival City, with wide ‎participation from both inside and outside the country.‎

 

Dr. Fatima Al Jasmi, President of the Conference and Head of the Department of ‎Genomics at the College of Medicine and Health Sciences at UAEU, said “The 1st ‎congress, with the participation of more than 28 international experts and 55 ‎specialized doctors from within the country, discusses within 75 sessions the best ‎diagnostic and therapeutic methods and examinations for patients. The conference ‎will review the latest drugs and treatments for the treatment of rare diseases. It is also ‎a unique opportunity to exchange information and knowledge and learn about the ‎latest studies and advanced technology in rare diseases and best practices in the field ‎of rare diseases.”‎

 

‎“The conference focuses on 4 main topics; genetics and metabolism, rare diseases in ‎various sub-disciplines, genomics, and artificial intelligence. This is in addition to a ‎track for patients and their families, in which experts and specialists in the fields of ‎inclusive education, prevention specialists and cell therapy participants will participate. ‎It also presents inspiring stories of heroes at the local and Gulf levels and presents the ‎services of supportive services centers in various supportive disciplines. Family ‎sessions also include presentations and the organization of eight workshops and family ‎support sessions on the most common rare diseases”, she added.‎

 

Dr. Fatima Bastaki, Consultant Clinical Geneticist Latifa Hospital - DHA, UAE ‎stated, "The conference, which grants participants 46.5 credit hours for continuing ‎medical education by the Ministry of Health and Community Protection and the ‎Department of Health - Abu Dhabi, aims to raise public awareness of rare diseases and ‎solidarity with patients, and to educate patients and their families about the nature of ‎these diseases, methods of diagnosis and treatment, and provide them with ‎information and scientific knowledge about these diseases. In addition, it also acts as ‎a forum for exchanging international and local experiences to develop mechanisms ‎and practices of diagnosis and modern methods of treatment, as well as supporting ‎and promoting scientific research in the areas of rare diseases and improving the ‎quality of life of the injured.

 

One of the other aims of the meeting is to urge health ‎institutions in the country to implement comprehensive programs for patient care and ‎create a healthy environment new and appropriate when receiving treatment.”‎

 

On her part, Ms. Nafisa Tawfiq, Chairperson of the Board of Directors of the ‎Emirates Rare Diseases Society, said that the Society is working on activating a ‎scientific research project in the field of rare diseases to reach treatments for some rare ‎diseases in the country that have no cure at the global level, in cooperation with ‎accredited research and academic bodies in the country. This requires encouraging ‎channels that support research programs and finding support mechanisms, ‎strengthening relations with existing partners to expand the scope of support provided ‎to the association to serve members and their families affected by rare diseases, ‎striving to make new agreements that serve rare groups that have a role in improving ‎the quality of their lives such as health and social authorities in the country, and ‎working to expand the scope of dealings with similar associations outside the State to ‎benefit from their expertise and exchange experiences in the field.‎

 

His Excellency Abdullah bin Souqat, Executive Director of the Sheikh Hamdan bin ‎Rashid Al Maktoum Award for Medical Sciences, confirmed that the award has paid ‎great attention to the issue of rare diseases and contributed significantly to the ‎establishment of the Emirates Society for Rare Diseases and its hosting of the Society ‎at the award's headquarters for two years‏.‏

 

‎"The Award's support for this conference comes from the award's fulfillment of its ‎societal responsibility, through which it aims to raise the level of awareness among all ‎members of society of the nature of these serious and chronic diseases in terms of ‎ways to prevent and their early detection, in addition to receiving appropriate ‎treatment”, he added.‎