Emirates Rare Diseases Association 05 March 2018

With the support of the Sheikh Hamdan Bin Rashid Al Maktoum Award for Medical Sciences, the Community Development Authority has taken a decision, under Federal Law 12, Decree 7 of 2018, to l the UAE Society for Rare Diseases as a Civil Society Organization based in Dubai. The society seeks to educate the community and support those suffering from rare diseases and their families. The society also aims to provide psychosocial and financial support to these patients and include researchers and medical professionals in the fight to raise awareness of rare diseases in the wider community by supporting medical research. This would be made possible with the support of local, federal government agencies, NGOs, and international organizations within and outside the UAE.

The Board of Directors has been selected: Mr. Meshaal Abdul Wahab, President of the Society; Professor Nafisa Mohammed Toufic, Vice President; Miss Fawziyah Hassan Al Balooshi; Ms. Awatif Abdel Baqi Al Jasmi, Treasurer; Dr. Fatima Al Bastaki; Dr. Amal Al Taneeji; Ms. Zakia Khalifa Al Riyami; Ms. Huda Ahmad Al Hashimi, and Ms. Mabrooka Ali Al Nabhani.

Mr. Abdul Wahab has highlighted the society’s role in the public and private sector through volunteering opportunities, and ensuring that it is the only concerned party in the nation with respect to rare diseases. The society also aims to provide membership opportunities under terms and conditions agreed upon by the Community Development Authority.

He also extended his sincere gratitude to His Excellency Mr. Abdullah Bin Sougat, Executive Manager of the Sheikh Hamdan Bin Rashid Award for Medical Sciences, for his support of the society and for providing temporary headquarters at the Award’s office in Mankhool.

Ms.Nafisa Mohammed Toufic added that the society would serve as a gateway to the fulfillment of treatment goals, the provision of psychosocial support for patients, raising awareness and educating the community – all of which are longstanding wishes clinicians have had.

Furthermore, she added: “The society is a platform for social discourse, within which patients’ families can share their experiences in helping their children cope physically and psychologically with their diagnoses. We have certainly not forgone the crucial psychological support required for both patients and their families, which we hope to provide through support groups and online discussion forums.

We are ultimately thankful to His Excellency Mr. Abdullah Bin Souqat, Executive Manager of the Sheikh Hamdan Bin Rashid Al Maktoum Award for Medical Sciences, for his support of this cause over the past 8 years, as well as the Civil Society licensing body of the Community Development Authority for facilitating the final steps taken in bringing the society to fruition. The Board of Directors shall work hand in hand with the community with one plan, and that is to achieve the society’s goals in the shortest time possible.”

Dr. Fatma Al Bastaki, Consultant Pediatrician in Clinical Genetics and Metabolism, and member of the Board of Directors of the society, has attested that her dream of bringing the society to life has come true by the grace of God, and with the unparalleled support of His Excellency Abdullah Bin Souqat, who gave high priority to this cause as a result of his great faith in the health of Emirati families.

We are also grateful to Mr. Hamad Al Manai,

She explained, based on her experience, that while hereditary illnesses are usually apparent at birth, 80% of cases are considered rare, wherein symptom presentation is delayed. This bears a heavy weight on patients’ families, and patients suffer multiple struggles, such as:

  • Misdiagnosis
  • Delayed diagnosis and treatment
  • A lack of clinical information and resources
  • Limited treatment options
  • Limited accessibility to adequate medical services
  • Treatment costs compared to treatment costs for common illnesses
  • Difficulty accessing medical, social, and financial support – general practitioners are usually not as well-versed in rare illnesses as specialist doctors, and the complications of these illness are difficult to cope with for both patients and their families.

The society aims to provide patients with financial support and allow their voices to be heard by major decision-makers in the medical field all over the world, as well as to encourage the exchange of clinical information and the development of awareness programs. Moreover, the society will provide its services to all residents of the UAE suffering from rare illnesses.

The mother of a patient echoed the community’s sentiments in response to the society’s launch: “I was very happy to hear that the society we had all been asking for was finally formed – now our voices may be heard and the community can better understand our experiences. The medical community will now be aware of the population of patients dealing with conditions that have gone unrecognized, since their symptoms cannot be felt or seen. We have a huge responsibility as these patients’ parents towards the society, because it was formed for us. I will be one of the society’s first members and I will invest all efforts in achieving our collective goal and letting our voices be heard across the globe. The Year of Zayed has come as a blessing, and the rulers of the UAE have never neglected people in need.

His Excellency Abdullah Bin Souqat added that the Sheikh Hamdan Award has given rare diseases top priority over the last 8 years through its many awareness campaigns, school competitions, and research led by the Center for Arab Genomic Studies.

In the same context Dr.Mahmoud taleb Al Ali  the Director of the Center for Arab Genomic Studies said” that 1 out of 17 people suffer from a rare disease, this amounts to the 7% of the population. There are more than 6000 known rare diseases, of different prevalence rates, and this number is continuously growing. It is estimated that there are 25 million people living with a rare disease in the Arab World, 30 million in Europe and 300 million worldwide”

He added” The first step towards tackling the burden of rare diseases in the community goes through proper characterization of the current picture of these disorders on the local and regional levels. CAGS plays an important role in this by maintaining the Catalogue of Transmission Genetics in Arabs Database (also known as CTGA).  CTGA has developed qualitatively and quantitatively over the past few years to become the largest ethnic-based database worldwide”

Mr. Reda Abdul Fattah Abu Hijazi and Mr. Ahmad Al Shaibani, representatives of Social Benefits sector under the Community Development Authority, had given a comprehensive explanation of Law (2), 2008, in the Regulation of Civil Society Organizations in Dubai and the steps taken in their formation, especially those involving the recruitment and development of the society’s Board of Directors, coordinating General Assemblies, and setting up memberships programs. They also added that the Community Development Authority would offer extensive support to the society in its future endeavors.

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