Fifth MENA Congress for Rare Diseases 2026 Opens in Abu Dhabi with 1,500+ Participants
The Fifth MENA Congress for Rare Diseases 2026 has officially opened in Abu Dhabi, bringing together more than 1,500 participants and over 140 specialists from the fields of genetics and rare diseases for three days of scientific exchange, professional collaboration and discussion on the future of rare disease diagnosis, treatment and research.
The major healthcare gathering is providing a platform for clinicians, researchers, genetic specialists, healthcare leaders and other professionals to examine the latest developments in rare disease care. This year’s congress brings together more than 40 international experts representing over 20 countries, creating an opportunity for participants from across the Middle East and North Africa and the wider global medical community to share knowledge and explore new approaches to managing complex genetic and rare diseases.
The congress is being organized in partnership with Burjeel Medical City, Burjeel Cancer Institute and the Genetics and Rare Disease Center. It is being held with the support and participation of the Department of Health – Abu Dhabi (DoH), highlighting the emirate’s growing focus on healthcare innovation, specialized medicine and life sciences.
The opening ceremony was attended by Dr. Asma Al Mannaei, Executive Director of the Health Life Sciences Sector at the Department of Health – Abu Dhabi, and Dr. Mujtaba Ali Khan, CEO of Burjeel Medical City.
Bringing Global Rare Disease Experts Together
Rare diseases frequently present significant challenges for healthcare systems because patients may experience complex symptoms, require specialized diagnostic testing and need treatments that are not widely available. The congress aims to strengthen collaboration between medical professionals and researchers working to address these challenges.
With more than 140 speakers participating in the event, the scientific program covers a broad range of subjects related to genetic medicine and rare disease management. More than 30 scientific sessions are scheduled during the congress, offering participants opportunities to examine clinical developments as well as broader issues affecting patients and healthcare providers.
The event’s international participation is also intended to encourage knowledge exchange between healthcare professionals working in different healthcare systems. Experts from more than 20 countries are contributing their perspectives on diagnosis, therapeutic development, clinical research and patient access.
This global exchange is particularly important in rare diseases, where individual countries and institutions may encounter relatively small patient populations. International collaboration can help researchers and clinicians share scientific knowledge, clinical experiences and emerging treatment strategies.
Expanding the Conversation Beyond Clinical Care
While clinical developments remain a central focus of the congress, the 2026 program expands the discussion into several areas that influence the broader rare disease ecosystem.
Among the topics being examined are the health economics of rare diseases, insurance coverage and medical education. These issues are becoming increasingly important as advanced therapies enter clinical practice and healthcare systems consider how to provide sustainable access to innovative treatments.
The economic impact of rare diseases can extend beyond the cost of medicines. Patients and families may require long-term medical care, specialized services, genetic counseling and ongoing support. Healthcare professionals therefore need to consider not only the effectiveness of a treatment but also how patients can gain timely and sustainable access to appropriate care.
Insurance coverage is another important consideration. Advanced therapies can involve significant costs, making reimbursement policies and healthcare financing important components of discussions surrounding rare disease management.
Medical education is also receiving attention as advances in genomics and precision medicine continue to change clinical practice. Healthcare professionals need updated knowledge and specialized training to recognize rare diseases, interpret genetic information and understand new treatment options.
Focus on Emerging Therapies
One of the major themes of the scientific program is the development of advanced treatments for genetic and rare diseases.
Sessions are examining enzyme replacement therapy, new diagnostic approaches and other emerging therapeutic strategies. Enzyme replacement therapy has become an important treatment approach for certain inherited metabolic disorders, where patients lack or have insufficient levels of specific enzymes.
The congress is also highlighting advances in gene therapy for several serious conditions, including hemoglobinopathies, hemophilia, Duchenne muscular dystrophy and spinal muscular atrophy.
Gene therapy represents a major area of innovation in rare disease medicine because it seeks to address disease mechanisms at the genetic level. As research progresses, healthcare professionals are evaluating how these therapies can be developed, delivered and integrated into clinical practice.
Another major area of discussion is gene editing, including emerging technologies such as CRISPR-Cas9. Gene-editing approaches have generated significant interest among researchers because of their potential to modify specific genetic sequences associated with disease.
The congress provides an opportunity for specialists to discuss both the scientific progress and the practical challenges associated with these technologies, including clinical development, patient selection, safety considerations and access.
Genomics and Multi-Omics Take Center Stage
Advances in genomics and multi-omics are also featured prominently in the scientific program.
Genomic technologies have transformed the way healthcare professionals investigate inherited diseases. Genetic testing can help identify disease-causing variants and may contribute to earlier and more accurate diagnoses for patients who have previously experienced lengthy diagnostic journeys.
Multi-omics approaches go further by examining multiple layers of biological information. These approaches can provide researchers with a more comprehensive understanding of disease mechanisms and may contribute to the development of more precise diagnostic and therapeutic strategies.
The integration of genomics into clinical practice also creates a need for specialized expertise. Genetic counselors, laboratory specialists, physicians and researchers must work together to interpret complex information and translate scientific findings into meaningful clinical decisions.
Artificial Intelligence and Rare Disease Diagnosis
Artificial intelligence is another emerging area being discussed at the congress.
AI technologies are increasingly being explored across healthcare, including applications involving medical imaging, genomic analysis, clinical decision support and patient data interpretation. In rare disease medicine, AI could potentially support clinicians and researchers in identifying patterns within complex datasets and helping prioritize potential diagnoses.
The role of AI in rare disease care is therefore being considered alongside broader advances in scientific research and innovation. Discussions at the congress examine how technology can support the diagnosis and management of genetic conditions while complementing clinical expertise.
As rare diseases can be difficult to recognize, technologies capable of analyzing large volumes of medical and genetic information may become increasingly valuable. However, effective implementation requires appropriate validation, clinical oversight and responsible use of patient data.
Dedicated Summits Address Specific Rare Diseases
The Fifth MENA Congress for Rare Diseases is being held alongside several specialized gatherings focused on specific areas of genetic medicine.These include the Third MENA Summit for Genetic Counselors, the Fourth MENA Summit for Duchenne Muscular Dystrophy, the Fourth MENA Summit for Angelman Syndrome and the Fourth MENA Summit for Huntington’s Disease.
The combination of the main congress with specialized summits creates an expanded forum for professionals to explore disease-specific challenges while also engaging with broader developments in rare disease medicine.Genetic counseling is particularly important in the rare disease field because patients and families may need assistance understanding genetic test results, inheritance patterns, reproductive considerations and available care options.
Meanwhile, dedicated sessions on Duchenne muscular dystrophy, Angelman syndrome and Huntington’s disease allow specialists to focus on the clinical, genetic and therapeutic considerations associated with individual conditions.
Strengthening Clinical Trials and Innovative Medicine
Clinical research and the development of innovative medicines are also key elements of the congress program.Participants are discussing clinical trials in the MENA region and exploring strategies for supporting the development and adoption of innovative treatments. Clinical trials are essential for determining whether new therapies are safe and effective and for generating evidence that can guide medical practice.
For rare diseases, conducting clinical research can present unique challenges because patient populations are often small and geographically dispersed. Collaboration between institutions and countries can therefore play an important role in expanding opportunities for research participation.
The congress also examines strategies to improve access to advanced therapies. Scientific innovation can only have a meaningful impact on patients if appropriate treatments can reach those who need them.
Research from Around the World
The scientific program includes peer-reviewed research abstracts submitted by researchers from around the world.
The inclusion of international research gives participants an opportunity to explore new findings and emerging scientific work across different areas of rare disease medicine. Three winning abstracts submitted by researchers from Brazil, the United Kingdom and France are being recognized and presented during the congress’s scientific sessions.
Recognizing research contributions from different parts of the world reinforces the international character of the event and highlights the importance of cross-border scientific collaboration.
For researchers, such platforms can provide opportunities to share findings with clinicians and other specialists while receiving feedback from an international professional audience.
Recognizing Outstanding Contributions to Rare Diseases
Alongside the scientific program, the congress is recognizing individuals and organizations that have contributed significantly to advancing the rare disease field through the Awards for Outstanding Achievement in Rare Diseases.
In the Clinician category, awards were presented to Dr. Arif Khan, Consultant Pediatric Neurology and Director of the Gene Therapy Program at Fakeeh University Hospital, and Dr. Cristina Skrypnyk, Consultant Medical Genetics in the Genetics and Inherited Disorders Department at Al Jawhara Center for Molecular Medicine in Bahrain.
The Researcher category recognized Dr. Afsheen Raza, Associate Professor and Director of the Abu Dhabi University Cancer Research Institute.
In the Leader category, the award went to Prof. Mahir Al-Hilali, Senior Corporate Director of Laboratory Services at Mediclinic Middle East.
The Organization category recognized Chiesi Ltd, a global biopharmaceutical company focused on developing innovative treatments, including therapies for rare diseases.CENTOGENE GmbH, a Germany-headquartered global diagnostics company supporting the diagnosis of rare and genetic diseases, was also recognized.
These awards highlight the contributions of healthcare professionals, researchers, industry leaders and organizations working to advance diagnosis, research and treatment in rare diseases.
Abu Dhabi’s Growing Role in Specialized Healthcare
The congress also reflects Abu Dhabi’s increasing role as a regional center for healthcare innovation and specialized medicine.
By hosting an international gathering focused on rare and genetic diseases, Abu Dhabi is creating opportunities for healthcare professionals and researchers from the region and around the world to connect and exchange knowledge.
The participation of the Department of Health – Abu Dhabi further demonstrates the importance of rare disease research and specialized care within the emirate’s wider healthcare and life sciences agenda.
The collaboration between healthcare institutions, government stakeholders, researchers and industry organizations is essential for building stronger rare disease ecosystems. Such partnerships can support research, clinical education, patient care and the adoption of emerging technologies.
Shaping the Future of Rare Disease Care
The Fifth MENA Congress for Rare Diseases 2026 is bringing together multiple elements of the rare disease landscape, from clinical medicine and genetic counseling to research, advanced therapies, healthcare economics and technology.
With more than 1,500 participants, over 140 speakers and experts from more than 20 countries, the event provides a broad platform for discussion around the challenges and opportunities facing rare disease care.
The emphasis on gene therapy, gene editing, genomics, multi-omics, artificial intelligence and innovative medicines demonstrates how rapidly the field is evolving. At the same time, discussions around insurance, healthcare economics, education and access underline the importance of ensuring that scientific progress translates into meaningful benefits for patients.
As research continues to advance and new therapeutic approaches move toward clinical application, collaboration among clinicians, researchers, healthcare organizations, governments and industry will remain essential.
The Fifth MENA Congress for Rare Diseases 2026 therefore serves not only as a forum for sharing current scientific developments but also as a platform for shaping future approaches to rare disease diagnosis, treatment and research across the MENA region and beyond.
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