"There must be a comprehensive regional strategy to combat rare diseases," says Sheikh Nahyan Bin Mubarak

In the presence and under the patronage of Shaikh Nahyan Bin Mubarak Al Nahyan, Cabinet Member and Minister of Tolerance and Coexistence, the MENA Congress for Rare Diseases has commenced in Abu Dhabi. The four-day event brings together 141 speakers, including 51 international experts, from 27 countries. The MENA Congress for Rare Diseases is held in partnership with Burjeel Medical City (BMC), which is the flagship facility of Burjeel Holdings. The largest event in the field, the congress comprises 41 sessions covering a wide range of topics including recent research, advancements in diagnostics and therapeutics, regional experiences, and challenges related to rare diseases.

Shaikh Nahyan, in his inaugural address, emphasised the UAE’s strong commitment to public health and advancing medical knowledge. “Under the leadership of His Highness the President, Shaikh Mohammed bin Zayed Al Nahyan, we, in the UAE, are committed to preventing disease, as well as treating it and caring for patients with empathy and compassion. Our approach is comprehensive: we want to promote preventive care against the conditions that cause disease. At the same time, we are always searching for effective ways to diagnose, treat and manage disease, whether common or rare.”

Shaikh Nahyan focused on the need for partnerships across sectors and regional and international cooperation to combat rare diseases. Speaking to the delegates, he said, “I also share in your conviction that we need an effective regional strategy where combating rare diseases is a national and regional health priority. Such a strategy must be focused and comprehensive: superior medical personnel and first-rate health facilities are essential components. We must also increase public knowledge about these diseases and make people aware of the common risk factors. We must assist patients in learning how to live with a rare disease. Physicians are on the front line of the fight against rare diseases and must embrace patient education as a key part of their role.”

“I am delighted that BMC, with the guidance of Dr. Shamsheer Vayalil, is demonstrating its leadership in our country’s medical sector by hosting this congress. The launch of their project NADER here today also signals their determination to be the best in the field of treating rare diseases,” added Shaikh Nahyan. He also acknowledged the Department of Health - Abu Dhabi’s support in expanding healthcare capabilities and backing impactful initiatives.

Professor Ayman El-Hattab, the congress chairman, and Professor Khaled Musallam, Group Chief Research Officer of Burjeel Holdings and the congress’ scientific committee head, briefed the Minister on the congress agenda.

“In the UAE and under the leadership of President His Highness Shaikh Mohamed Bin Zayed Al Nahyan, we have become more aware of the optimal strategy to handle rare disorders, and collaborative research to develop new and curative therapies. BMC further strengthens this commitment through our Center for Research on Rare Blood Disorders (CR-RBD), which has made considerable contributions to improving our understanding of rare hematologic conditions and developing new treatment options through global clinical trials. These efforts, designed to improve the outcomes of patients with rare blood disorders, perfectly align with the goals of this congress,” said Dr. Shamsheer Vayalil, Founder and Chairman of Burjeel Holdings.

Engaging participation

Rare diseases affect at least 5 per cent of the population, and the MENA (Middle East and North African) region has a higher prevalence of rare diseases. The congress agenda was crafted to be comprehensive and inclusive of the majority of rare disorders and focuses on highlighting key unmet needs and potential solutions through best clinical practices and research. More than 1,100 attendees are present at the congress, representing 38 countries, including physicians, students, researchers, representatives of laboratories, pharmaceutical companies and healthcare institutions, along with patients and their families. The congress which began on Thursday will end on Sunday.