February 28, 2014

Rare Disease Day

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For the 7th year in a row:
Under the slogan "With Research, Possibilities are Limitless":Hamdan Medical Award launches its awareness campaign on rare diseases

Under the slogan "With Research, Possibilities are limitless", Sheikh Hamdan bin Rashid Al Maktoum Award for Medical Sciences launched its awareness campaign on rare diseases. The one-week campaign is held in conjunction with the Rare Disease Day, which is an annual event falls on the last day of February.

This came during a ceremony organized by the Hamdan Medical Award (HMA) at the Children's City, Dubai Greek Park, in the presence of Sheikh Rashid bin Saeed bin Maktoum al Maktoum, and his sister Sheikha Mozah bint Saeed bin Maktoum Al Maktoum, along with a group of doctors, specialists, officials from concerned governmental institutions, and patients with rare diseases and their families.

In his opening speech, Abdulla Bin Souqat, a member of the Board of Trustees of HMA, spoke about the award’s patronage for this event for the 7th consecutive year which 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, regarding the award’s social responsibilities. The award aims at raising the awareness of the society towards these serious and chronic diseases in terms of the ways of prevention, early detection and treatment.

“The participation by officials from UAE authorities and ministries in today’s event is an evidence for their interest in the issues of people with special needs, particularly those with rare diseases”.

“The concerned bodies are keen to open a community dialogue with patients and their families to identify their problems, and find out satisfactory solutions which could be translated into decisions to reduce their suffering”.

“Our plan for the rare diseases awareness campaign is to be on throughout the year, in order to reach the largest possible number of people from various categories”.

During the ceremony, a round-table discussion was held with the participation of Fatima Al-Sejwani, psychologist, Ministry of Education, Moza Al-Dali, psychologist, Ministry of Community Development, Dr. Sarah Al-Dallal, Health Funding Department, Dubai Health Authority, and Sheikh Khaled Ismail, Islamic Affairs and charitable Activities Department, Dubai.

Dr. Fatima Bastaki, Consultant Pediatrician and Clinical Geneticist, Latifa Hospital for Women and Children, and the Chairman of the Organizing Committee of the awareness campaign, said: “Through the discussion, a numerous of inquiries were raised by the patients and their families about the problems they face since the birth of the child till joining to the school”.

“There is a proposal submitted by parents about the establishment of an advisory specialized body to communicate with parents who have children with rare diseases”.

“The responsibility of this body would to follow-up the case of each patient, separately, and to provide the recommendations about the best diagnostic ways for them, how to receive the appropriate treatment, and how to get the suitable education, whether through joining a rehabilitation center or a regular school”.

“During the discussion, the families were briefed on the future plans of the Dubai Health Authority to include the people with rare diseases in the services provided by the private insurance companies in Dubai”.

“Also, the officials from the UAE Ministry of Education explained how the procedures taken by the ministry to estimate the mental capabilities of the children with rare diseases is essential to decide whether the public schools or rehabilitation centers are suitable for each one of them”.

During the ceremony, Sheikh Hamdan Bin Rashid Al Maktoum Award for Medical Sciences announced the winners of the competition of the distinguished school in the activities of rare diseases namely; Kalba school for elementary education, cycle1, for girls, Sharjah, and Zayed bin Sultan Primary School, cycle1, for boys, Dubai.

Also, the HMA honored its strategic partners including the DHA, UAE Ministry of Education, Abu Dhabi Education Council, Dubai Sports Council, Dubai Police, Roads and Transport Authority, Dubai Foundation for Ambulance Services, Dubai Municipality, Emirates Motor Sports Federation, Greek Park, the pharmaceutical companies of Sanofi Genzyme, Genfarm, and Alexion, Majid al Futtaim Properties, Galadari Motor Driving Center, and Promo Seven company.

At the end of the ceremony, the bikers' parade arrived to the park, carrying the logo of the Rare Disease Day.