February 28, 2014

Rare Disease Day

Share your rare, Share your care

Under the slogan "With research.. possibilities are limitless":
Hamdan Medical Award organizes the awareness campaign on rare diseases next week in Dubai

In conjunction with the Rare Disease Day 2017, which is an annual event comes on the last day of the month of February, and under the slogan "With research possibilities are limitless”, Sheikh Hamdan Bin Rashid Al Maktoum Award for Medical Sciences (HMA) is to organize its awareness campaign on rare diseases starting from this Saturday and throughout the week.

On this occasion, the HMA has received participations in the competition of the distinguished school in the activities of rare diseases from a number of public and private schools within the UAE. The participating schools submitted their reports about their innovative programs through which the students worked on raising awareness on the rare diseases and the rights of patients.

These programs included many lectures, plays, songs, workshops and competitions which were organized by the students, as well as field visits to a number of Emirati families, during which they distributed the brochures they made on this topic.

Within the same context, Abdullah bin Souqat, a member of the Board of Trustees of HMA, said: For the 7th consecutive year, the award sheds light on the topic of the rare diseases, especially that the UAE is among the countries which is interested in preserving the rights of people with special needs.

“Despite the specificity of rare diseases, affecting a limited number of people from all over the world, the patients have the right of getting the accurate diagnosis and the effective medicine in order to put their diseases under control and to prevent its development into mental or movement disabilities, or even to death”, he added.

“By raising the slogan of the Rare Disease Day 2017 namely, “With research possibilities are limitless”, the Hamdan Medical Award calls on the research organizations, and health and medical authorities at the state level to conduct more studies on these disorders and then putting the appropriate preventive strategies”, he added.

“In the light of the new research aspects such as the personalized medicine, I believe that the anticipated remarkable leap in the medical research, would be positively reflected on the better diagnosis and treatment for rare diseases”.

“The HMA works on combating rare diseases, and its Centre for Arab Genomic Studies (CAGS) has recently succeeded, in cooperation with Latifa hospital for Women and Children in Dubai, to detect new genetic mutations’ links to a number of genetic disorders among Arab children”, Abdullah bin Souqat added.

For her part, Dr. Fatima Bastaki, Consultant Pediatrician and Clinical Geneticist, Latifa Hospital for Women and Children, and the Chairman of the Organizing Committee of the campaign, spoke about the main goal of the awareness campaign which is educating people from all segments of the society about rare diseases, the preventive ways, and early detection.

She said: To this end, the awareness campaign has 3 stages, the first one will be on February 25, at the Children's City in Creek Park. The HMA will organize a ceremony to patients and their families.

“The ceremony includes many entertainment activities for children patients and a round-table discussion to be attended by specialists such as clinical Geneticists, researchers, psychologists, sociologists, and officials from health authorities”, she said.

“The aim of this discussion is to answer the questions of patients and to give them solutions for their problems”.

“Also, during the ceremony, the winners of the competition of the distinguished school in the activities of rare diseases will be honored”.

Dr. Fatima Bastaki mentioned to the second stage of the awareness campaign, on 26 and 27 February, during which a group of Emirati clinical geneticists will present a number of awareness lectures to the students of public and private secondary schools in Abu Dhabi, Al Ain, Sharjah, and Ras Al-Khaimah.

As for the third stage of the campaign, from February 28 until March 2, a group of professionals and volunteers will be at the Mirdif City Center, in order to communicate with the visitors of the shopping center. The visitors will know more about the rare diseases. Also, handbooks, brochures and souvenirs will be distributed.