The UAE Rare Disease Society announced during the congress that the country will host the International MPS Network Conference in 2028, marking the first time the event will be held in the Middle East and North Africa region. Running through September 20 under the theme United for Rare: Empowering Families, Advancing Care, the gathering features more than 70 speakers including 15 from overseas along with 43 lectures, nine workshops and six symposia. According to the society, the programme includes both scientific and family-focused tracks to exchange knowledge on the latest developments in rare disease management.
Organisers of the congress urged international partners to share expertise developed through the UAE Genome Programme, which has sequenced more than 800,000 Emirati genomes to date. Dr Noha Al Zaabi, president of the 4th International UAE Rare Disease Society Congress and a consultant in genetic and metabolic disorders, highlighted the nation’s leadership in research and collaboration at the event’s opening. A Department of Health Abu Dhabi assessment found that the programme supports personalised and preventive care by building one of the world’s most diverse national genomic databases.
The Emirati Genome Programme aims to analyse one million samples from UAE nationals to better understand genetic diversity and combat both rare and chronic conditions, the Ministry of Health and Prevention has reported. This effort has already enabled the integration of genetic testing into premarital screening and newborn programmes, expanding detection of hundreds of hereditary disorders. The National reported that such initiatives address the elevated prevalence of certain genetic conditions linked to consanguinity rates in the region.
A recent study of more than 43,000 Emirati genomes identified millions of variants, including those associated with thalassemia, metabolic disorders and hearing loss, according to researchers involved in the Emirati Genome Program. These findings have contributed to updated premarital screening panels that now cover more than 700 genes, doubling the detection rate of at-risk couples compared with similar programmes elsewhere. Public health officials have integrated the resulting insights into national strategies for early intervention and tailored treatments.
The congress also recognised outstanding contributions to the field with awards presented to international and regional figures working on rare disease advocacy, research and clinical care. Participants reviewed advancements in newborn screening guidelines rolled out by the Ministry of Health and Prevention across all hospitals in the country in 2024, which now include tests for genetic, metabolic and endocrine disorders. Data from the programme has additionally supported partnerships such as the one with the University of California San Francisco to explore genome surgery applications for severe inherited conditions.
Broader regional efforts have seen the MENA area emerge as a hub for rare disease research, with the UAE’s genomic database serving as a key resource for global studies on founder mutations and recessive disorders. The National noted that population-wide genomic sequencing provides advantages in implementing targeted health plans that reach entire citizen groups efficiently. Congress sessions emphasised how sharing such expertise could accelerate progress in diagnostics and therapies worldwide while strengthening patient support networks.
