4th International UAE Rare Disease Society Congress opens with six specialised healthcare workshops

4th International UAE Rare Disease Society Congress opens with six specialised healthcare workshops

Dubai, 18th September (WAM) -- The 4th International UAE Rare Disease Society Congress began today in Dubai with six specialised workshops covering a range of key topics. The workshops were led by experts and specialists from the United Arab Emirates and around the world.

The first workshop, presented by Masooma Al Jasmi from the United Arab Emirates, explored nutrition as part of rare disease treatment.

It highlighted the essential role of specialised medical nutrition therapy in managing rare diseases and inherited metabolic disorders, and presented practical dietary strategies that can help achieve metabolic stability and improve health outcomes and quality of life.

The second workshop, titled “Genetic Counselling in Rare Diseases,” was presented by Dr. Richa Soni from the United Arab Emirates. It focused on the core principles of genetic counselling practice, including risk assessment, inheritance patterns and communication with family members, as well as ways to support informed decision-making and address the psychosocial aspects associated with rare diseases.

The third workshop addressed emergency management in metabolic disorders. Presented by Dr. Mahra Al Fattan and Dr. Dalia Raad Said from the United Arab Emirates, it outlined a scientific approach to the early recognition and management of acute metabolic decompensation, including warning signs, initial stabilisation, essential investigations and urgent interventions to reduce complications and mortality.

The fourth workshop, “Genetic Test Results: How to Interpret Them,” was presented by Dr. Azza Attia from the United Arab Emirates. It offered a structured approach to reading genetic test reports and understanding the classification of genetic variants, including pathogenic variants and variants of uncertain significance, as well as correlating genetic findings with clinical features and applying them in medical practice.

The fifth workshop was presented by Dr. Eman Al Shamsi from the United Arab Emirates and highlighted the approach to bleeding disorders. It provided practical guidance on assessing patients with abnormal bleeding, with a focus on medical history, clinical examination and laboratory testing to help distinguish between common inherited and acquired bleeding disorders.

The sixth and final workshop focused on how to apply for an ethical review of clinical research through the IRB/DSREC committee. Presented by Dr. Badriya Al Mershidi from the United Arab Emirates, it provided a practical, step-by-step guide to preparing and submitting a clinical research ethics review application, covering the required documents, informed consent, research governance and common reasons applications are delayed or returned for revisions.

The 4th International UAE Rare Disease Society Congress continues from 18th to 20th September at Le Méridien Dubai under the theme “United for Rare: Empowering Families, Advancing Care.”