In observance of International Rare Diseases Day

The College of Medicine and Health Sciences at the United Arab Emirates University, as part of its participation in the "UAE Innovates" program, has organized a virtual presentation of the Rare Diseases Day, in conjunction with the global observance of Rare Diseases Day 2021, in cooperation with the UAE Rare Disease Society and the Department of Genetics and Genomics, and in the presence of Dr. Fatima Bastaki - from the UAE Rare Disease Society.

Fatima Al Jasmi - Professor of Genetics and Genomics at the College of Medicine and Health Sciences explained that “Rare Disease Day is a global event that aims to raise awareness of rare diseases and their impact on the lives of infected people and the people who live with them and their families, given that 72% of rare diseases have a genetic cause. This is also considered an important day to highlight the contribution of genetic health scientists and academics in diagnosing and treating rare diseases, as well as providing a comprehensive presentation on the future of rare diseases.

During the virtual presentation of the Rare Diseases Day in the UAE, knowledge, experiences, stories and effective communication between patients, families, professionals and academics were exchanged on how rare diseases affect their daily lives and research contributions to these diseases.

Roger Foo - Visiting Professor in the Department of Genetics and Genomics from the National University of Singapore - gave presentation on rare heart diseases in Singapore, and pointed out that the Rare Disease Day is an international day to raise awareness of rare diseases, promote the culture of genetic diseases in the community, and the role of research in diagnosing and treating these diseases, in cooperation between international academic institutions.

Dr. Mona Saleh, Dr. Nadia Akkawi, and Professor Bassam Ali also discussed graduate studies in the field of genetic counseling and genomics at the university.

Dr. Hanadi Abdul Rahman presented a case study of rare diseases in the UAE, and Dr. Noura Al Dhaheri presented an overview of the treatment of rare diseases. Both Ms. Salama Ali Ahmed Al Nuaimi and Mrs. Azza Al Kaabi reviewed their personal experience with rare diseases.