On The Occasion Of The 4TH International Rare Disease Day:

On The Sidelines Of The 1st International UAE Genetic Metabolic Conference:

Sheikh Hamdan Bin Rashid Al Maktoum Award For Medical Sciences Organizes The Rare Disease Day

 

Under the patronage of HH Sheikh Hamdan Bin Rashid Al Maktoum, Deputy Ruler of Dubai, UAE Minister of Finance and the patron of Sheikh Hamdan Bin Rashid Al Maktoum Award for Medical Sciences, and on the sidelines of the 1st International UAE Genetic Metabolic Conference, the activities of the Rare Disease Day is held at Children's City in Creek Park in Dubai today.

 

For the first time in the Middle East, Sheikh Hamdan Bin Rashid Al Maktoum Award for Medical Sciences organizes the Rare Disease Day under the slogan "Rare but Equal" on the occasion of the International Rare Disease Day, which falls on 28 February of each year. 

 

Emirates Transport supports the rare disease day by providing free bus transport for participants from all emirates to Dubai Creek Park from 12 pm until 7 pm. 

 

Mr. Abdullah Bin Souqat the Executive Director of Sheikh Hamdan Bin Rashid Al Maktoum Award for Medical Sciences and a member of the Organizing Committee of the 1st UAE International Genetic metabolic Conference said that organizing the Rare Disease Day is a call for health sector’s institutions to conduct research and studies on Rare diseases on equally footing with common diseases, in order to overcome difficulties of diagnoses and treatment which reflect on the deterioration of patients’ health status. 

 

He added that at the same time of following-up lectures for senior doctors, psychologists and sociologists by families, children will be distributed on groups of volunteers according to their age and type of disability to take care of them throughout the day while playing and having fun at the children’s city. 

 

Bin Souqat said that among physicians participating in the lectures are Dr. Fatima Al Jasmi, Consultant Pediatric and Genetics metabolic at Faculty of Medicine - UAE University, Dr. Moen Al Said the Head of genetic diseases at King Faisal hospital - Riyadh, Dr. Arif Al Khalidi Consultant Obstetrics and Gynecology and IVF at Saad Hospital in Al-Khobar - Saudi Arabia, and Dr. Leena Al Amiri consulting psychologist - children. 

 

Among the participants in the Rare Disease Day are Sheikh Dr. Ahmed Bin Abdul Aziz Al Haddad great muftis and the Head of Fatwa Department in Dubai, Mr. Nazim Al Mansoor the manager of the department of rehabilitation for disabled at Ministry of Social Affairs, Dr Aref Al Mulla, the rehabilitation specialist, Ms. Noora Al Marri, the Director of the Department of Special Education in Ministry of Education, and Professor Mona Kazem the specialist in difficulties of learning. 

 

Abdullah Bin Souqat said that the activities of the day will be concluded with a motor march, raising the logo of the Rare Disease Day.

 

The march will start at 6 pm from the Creek Park, through Sheikh Zayed Road and Al Wasl Road, and ending with Sheikh Hamdan bin Rashid Al Maktoum Awards’ complex.

 

It is worth mentioning that studies referred to that there are between 6000 and 8000 Rare Diseases whose symptoms are varied from disease to another and from one patient to another who suffer from the same disease. 

 

Children suffer from 50% of rare diseases. 80% of rare diseases occur for genetic reasons, although the rest of them occur as a result of bacterial or viral infections, allergies, or environmental reasons.