Dubai, February 18, 2018:   Under the slogan, "Show your rare ... Show you care" and for the eighth year in a row, Sheikh Hamdan Bin Rashid Al Maktoum Award for Medical Sciences launched its awareness campaign on rare diseases. The one-week campaign is being held in conjunction with the Rare Disease Day, which is an annual event that falls on the last day of February.

H.E Abdullah Bin Souqat, Executive Director of the Sheikh Hamdan Bin Rashid Award for Medical Sciences said that the patronage for this event for the 8th consecutive year comes in line with the directives of the Patron of the award, H.H. Sheikh Hamdan bin Rashid Al Maktoum, Deputy Ruler of Dubai, and the UAE Minister of Finance, and with the Award’s social responsibilities. The award aims at raising awareness within the society towards these serious and chronic diseases in terms of the ways of their prevention, early detection and treatment. He added that the Award’s plans for the rare diseases awareness campaign was for it be on throughout the year, in order to reach the largest possible number of people from various categories.

 

Dr. Fatima Bastaki, Consultant in Pediatrics and Clinical Genetics at Latifa Hospital and Chairman of the Organizing Committee of the Awareness Campaign on Rare Diseases, said: "The first day of the awareness campaign saw workshops on three parallel tracks for families, nurses and nutritionists. The workshops were aimed at raising awareness among health care professionals, especially nurses and nutritionists, as well as regular outreach activities to families of patients and the general community. The workshops activity has been added this year for the first time in order to support patients and their families and facilitate their meetings with experts, raising the level of awareness among the community, the involvement of health care professionals.

 

The workshops focused on the rehabilitation of patients with rare diseases and the Psychological Journey of care-giving for Rare Diseases. The nurses' workshops dealt with the basics of genetics and practical applications in nursing, inherited metabolic disorders, and how to prevent rare diseases. The nutritionist’s workshops discussed rare metabolic disorders and treatment methods, as well as nutritional treatment for urea cycle disorders.

 

Dr. Fatima Al Jasmi, Assistant Professor of Pediatrics at the College of Medicine and Health Sciences at the United Arab Emirates University in Al Ain, and consultant for metabolic diseases at Tawam Hospital pointed out that both parents are responsible for the health of the baby and must ensure that all their children have been subjected to the national screening examination, provided by the Ministry of Health and Prevention. She stressed that rare diseases can be prevented through diagnosis and early treatment, and that common misconceptions around rare diseases should be cleared.