During the general assembly meeting – in the presence of the Ministry of Community Development and in accordance with the Public Associations and Institutions of Public Benefit law – the United Arab Emirates Rare Disease Society elected and welcomed a new Board of Directors.
Managing Director of Dubai Science Park and Chairing Member of the Pharmaceuticals and Medical Equipment Taskforce of the Dubai Industrial Strategy 2030, Marwan Abdulaziz Janahi was elected as Chairman of the Board. Other elected members include Nafsiya Mohammed Tawfiq as the Vice Chairman, Salama Al Nuaimi as the Secretary General, Awatef Abdul Baqi al Jasmi as Treasurer, and Dr. Fatima Abdullah Bastaki, Dr. Amal Muhammad Al Tunaiji and Maha Khalifa Al Kaabi as members of the Board. Zakia Khalifa Al Riyami and Mishaal Abdul Wahab Al Hammadi were elected as reserve members.
The Ministry of Community Development formed the UAE Rare Disease Society under Federal Decree Law No. (7) of 2018 as a Civil Organization, headquartered in Dubai. The Society aims to raise awareness and educate the community about those suffering from rare diseases. It also seeks to provide mental, social and moral support to patients and their families. The UAE Rare Disease Society partners with local and international civil institutions and NGOs to support and fund scientific research for developing new diagnostic tests and treatment for rare diseases.
Marwan Abdulaziz Janahi, Elected Chairman of the Board said, “The UAE is heavily invested in building a world-class healthcare infrastructure that focuses on elevating science, healthcare, as well as research and development sectors, reflecting on our strong leadership and the government’s wider vision. The UAE Rare Disease Society aims to extend a hand to patients and their families that live and cope with rare conditions, to help them through their social and mental struggles – and ultimately form a more inclusive society at large.”
He added, “The UAE Rare Disease Society collaborates and partners with national and global healthcare organizations to foster knowledge exchange and contribute to developing healthcare initiatives and innovative treatments for patients affected by rare diseases.”
Nafisa Tawfiq, Vice Chairman of the Board said, “The UAE Rare Disease Society hosted Dubai’s first international Genetic Metabolic Conference a few years ago and we look forward to expanding our initiatives to ensure a better future for patients in Dubai, the UAE, and beyond. Together with our partners, such as the Sheikh Hamdan Bin Rashid Al Maktoum Award for Medical Sciences, we aim to bring healthcare innovations to life and provide better quality of care for patients and their families.” Tawfiq thanked all former members of the Board for their commitment and support over the years to the Rare Disease Society.
According to the World Health Organization, a disease is considered rare if it affects less than 5 in 10,000 people. There are between 5,000 to 8,000 rare diseases that exist in the world today, most of which have a genetic basis. It is estimated that more than 300 million people worldwide are currently living with a rare disease that is challenging to diagnose and treat.
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