UAE rare disease congress highlights advances in precision medicine, genomics and family-centered care
 

(DUBAI) - The UAE is strengthening its approach to rare and inherited diseases through earlier diagnosis, genetic screening, precision medicine and advanced genomic technologies, senior health officials said at the opening of the 4th International UAE Rare Disease Society Congress in Dubai.

Held from 18 to 20 September at Le Méridien Dubai under the theme “United for Rare: Empowering Families, Advancing Care,” the Congress brings together physicians, researchers, genetic specialists, policymakers, patient advocates and families from the UAE and internationally to discuss developments in rare disease diagnosis, treatment and support.

At the official opening, H.E. Dr. Hussein Al Rand, Assistant Undersecretary for the Public Health Sector at the Ministry of Health and Prevention (MOHAP), said the UAE is placing increasing emphasis on building an advanced healthcare system centered on prevention, early diagnosis, precision medicine and modern genomic technologies.

He said these efforts are especially important for people living with rare and inherited diseases, which often require coordinated, multidisciplinary care.

Dr. Al Rand said MOHAP is supporting national efforts to prevent and identify inherited conditions early by strengthening genetic screening and counselling services. Priorities include further developing the premarital genetic screening system, supporting newborn screening programs, and expanding diagnostic capabilities in line with advances in genomic and personalized medicine.

Congress highlights latest developments in rare diseases

The Congress scientific program covers a broad range of developments, including premarital and newborn genetic screening, advanced sequencing technologies, laboratory diagnostics, innovative therapies, and gene therapy.

Sessions also address metabolic diseases, treatable rare disorders, genetic ethics, and the interpretation of genetic test results, reflecting the growing role of genomic medicine in the diagnosis and management of rare conditions.

Dr. Al Rand said scientific advances are creating new opportunities for patients and families, but translating these developments into improved outcomes requires stronger links between research and clinical practice.

He highlighted the importance of earlier diagnosis, clear referral pathways, healthcare professional training, and closer collaboration among health, academic, research, and social sectors.

He also stressed that rare disease care extends beyond the patient to the entire family. Psychological and social support, family empowerment, inclusion of people of determination and access to appropriate health and social services are therefore integral to comprehensive care.

UAE to host International MPS Network Conference in 2028

A key announcement at the Congress was the UAE’s successful bid to host the International MPS Network (IMPSN) Conference in 2028.

Dr. Noha Al Zaabi, President of the Congress, Consultant in Genetic and Metabolic Disorders and Board Member of the UAE Rare Disease Society, said the UAE will become the first country in the Middle East and North Africa to host the event.

“The 4th International UAE Rare Disease Society Congress is more than a scientific event; it is a platform for hope, partnership and action,” Dr. Al Zaabi said. “By bringing together healthcare professionals, researchers, policymakers, patients and their families, we can translate knowledge into earlier diagnosis, better treatments, stronger support systems and a brighter future.”

The Congress features two principal tracks — scientific and family — with more than 70 speakers and session chairs, including 15 international speakers. The program includes approximately 43 lectures, nine scientific and family workshops, and six specialized symposia.

Family needs placed at the center of Congress

Nafisa Tawfiq, Chairperson of the UAE Rare Disease Society and Chair of the Organizing Committee, said the Society works to connect people living with rare diseases and their families with decision-makers, healthcare providers, supporting organizations, and the wider community.

Held in conjunction with the UAE’s Year of the Family, the family program addresses quality of life, government services, premarital genetic screening, and family support. It also includes new support and advocacy initiatives and discussions on strengthening international partnerships.

Sessions during the Congress have addressed the transition of adolescents with inherited metabolic diseases from pediatric to adult care, long-term follow-up, late-presenting symptoms, and multisystem complications.

A dedicated session on premarital genetic screening examined its medical, social, and legal dimensions, including informed decision-making, genetic counselling, individual rights, and privacy.

The program has also explored emerging targeted treatments, including molecular, genetic, and enzyme-based therapies, as well as laboratory technologies designed to accelerate and improve the diagnosis of rare diseases.

Focus on inclusion and patient support

Patient and family experiences are another central component of the Congress. Sessions have highlighted community initiatives supporting children with rare diseases and their families, including the work of Morocco’s Sawt Al Qamar Association with children living with xeroderma pigmentosum.

The Congress has also examined services for people of determination, including assessment, social support, protection mechanisms, family services, and pathways designed to promote independence, inclusion, and quality of life.

The scientific program additionally explores the use of artificial intelligence to help patients and families organize medical information and formulate more precise questions when communicating with healthcare teams.

The Congress is held under the patronage of MOHAP and brings together government entities, healthcare providers, academic institutions, researchers, and patient organizations to strengthen collaboration in rare disease care.

The 4th International UAE Rare Disease Society Congress 2026 is accredited by the European Accreditation Council for Continuing Medical Education (EACCME) for up to 15 European CME credits.

                              
            

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