The UAE rare disease society announces a new board of directors

The new Board of Directors will ensure the Society continues to form new partnerships to raise awareness and contribute to providing social, mental, and psychological support to patients and their families

  
Marwan Abdulaziz Janahi, Managing Director at DSP

Marwan Abdulaziz Janahi, Managing Director at DSP

  • The new Board of Directors will ensure the Society continues to
    • form new partnerships to raise awareness and contribute to providing social, mental, and psychological support to patients and their families
    • support and fund scientific research for developing new diagnostic tests and treatments of rare diseases
    • collaborate with civil institutions and international NGOs in the UAE and abroad

Dubai: 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.

-Ends-

Send us your press releases to pressrelease.zawya@refinitiv.com

© Press Release 2021

Disclaimer: The contents of this press release was provided from an external third party provider. This website is not responsible for, and does not control, such external content. This content is provided on an “as is” and “as available” basis and has not been edited in any way. Neither this website nor our affiliates guarantee the accuracy of or endorse the views or opinions expressed in this press release.

The press release is provided for informational purposes only. The content does not provide tax, legal or investment advice or opinion regarding the suitability, value or profitability of any particular security, portfolio or investment strategy. Neither this website nor our affiliates shall be liable for any errors or inaccuracies in the content, or for any actions taken by you in reliance thereon. You expressly agree that your use of the information within this article is at your sole risk.

To the fullest extent permitted by applicable law, this website, its parent company, its subsidiaries, its affiliates and the respective shareholders, directors, officers, employees, agents, advertisers, content providers and licensors will not be liable (jointly or severally) to you for any direct, indirect, consequential, special, incidental, punitive or exemplary damages, including without limitation, lost profits, lost savings and lost revenues, whether in negligence, tort, contract or any other theory of liability, even if the parties have been advised of the possibility or could have foreseen any such damages.


More From Press Releases