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Monday, September 25, 2023

Burjeel unveils rare disease identification project in Abu Dhabi

Abu Dhabi: With the support of the Abu Dhabi Ministry of Health, Burjeel Holdings, in partnership with US biopharmaceutical company Bridge Bio Pharma, has launched the NADER project, which aims to identify rare diseases in the MENA region and provide patients with leading healthcare options. Clinical trials of the NADER project will be conducted in Abu Dhabi.

The NADER project aims to revolutionize the field of early diagnosis and treatment to improve patient outcomes. Entities intend to collaborate to identify patients with multiple rare diseases including achondroplasia, achondroplasia, FGFR-driven craniosynostosis, autosomal dominant hypocalcemia type 1, limb-girdle muscular dystrophy Type 2I, congenital adrenal hyperplasia, Canavan’s disease, propionate academia, methylmalonate academia, pantothenate kinase-associated neurodegenerative disease, and other diseases by mutual agreement.

Although these rare diseases affect a small proportion of the population and may present with nonspecific signs and symptoms, they are often misdiagnosed or only diagnosed later in the course of the disease after serious complications develop. Accurate and early diagnosis is critical to initiate intervention in a timely manner and avoid disease progression. The project will also allow the identification of patients who have already been diagnosed but currently do not have access to cutting-edge therapies or clinical trial options.

In the first phase of the NADER project, the two entities intend to leverage innovative risk assessment algorithms that will be deployed from secure internal data from healthcare providers to identify patients at risk for specific rare diseases. Expectations for future phases of the project include analyzing large volumes of data to identify disease-associated patterns and markers and generating personalized risk scores for patients, followed by genetic testing to confirm the diagnosis in identified potential patients.

The project also aims to develop awareness and education campaigns about these rare diseases to further support mapping activities and encourage local collaborations with other healthcare providers. Burj eel Holding will deploy the program in hospitals and medical centers across the UAE as part of routine diagnostic care and plans to expand the program through its growing healthcare infrastructure in the region. Local partnerships will also be sought to facilitate wider implementation.

Dr. Asma Ibrahim Al Mannai, Executive Director, Research and Innovation Center, Abu Dhabi Department of Health (Doh), said: “As part of our ongoing efforts to advance early diagnosis and treatment, Abu Dhabi Department of Health is honored to A leading partnership for the health and well-being of community members.

John Sunil, Chief Executive Officer of Burj eel Holdings, said: “The NADER project marks a major milestone in our commitment to providing the best possible care for patients. It brings together Burj eel’s expertise in healthcare delivery and promotion knowledge and Bridge Bio’s deep expertise in delivering breakthrough therapies for rare diseases. By combining our strengths, we seek to address the challenges of identifying rare diseases, which are often not diagnosed before symptoms become severe. The project will Enables early intervention, whether with existing or new therapies.”

The goal of the first phase is to develop a roadmap to bring new treatment options to identified patients through clinical trials.

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