MENA Organization for Rare Diseases was established to serve and support people with rare diseases in the region of the Middle East and North Africa (MENA). People with rare diseases and their families face many difficulties because of the scarcity of knowledge about these conditions and the limited support available for them. The MENA Organization for Rare Diseases aims to educate, connect, and support. First, we aim to educate, spread knowledge, and increase awareness about rare diseases among healthcare providers, patients and their families, researchers, the public, pharmaceutical companies, laboratories, administrators, and decision-makers. We achieve this goal through organizing scientific conferences, family meetings, social activities, workshops, and training programs. We also utilize online tools including publishing newsletters, creating educational webpages, and placing posts on social media. Second, we aim to connect people to exchange knowledge about rare diseases. We organize social events to connect families with rare diseases. We also create a database for rare diseases and establish a webpage platform to enable online communication among families with rare diseases. We also establish databases for healthcare providers to be able to connect individuals with rare diseases to healthcare providers. Third, we aim to support individuals with rare diseases and their families by establishing family support groups and facilitating receiving services from laboratories, healthcare facilities, rehabilitation centers, and social organizations.
The founder of the MENA Organization for Rare Diseases is Dr. Ayman El-Hattab who is a Professor at the College of Medicine, University of Sharjah, and a Consultant in Clinical Genetics running genetics clinics in several hospitals in UAE. Professor El-Hattab has three American Boards in Clinical Genetics, Biochemical Genetics, and Pediatrics. He is a Fellow of the American College of Medical Genetics and the American Academy of Pediatrics, in addition to many other international societies and associations. He has experienced more than 15 years in the field of genetics as he worked in the USA, Saudi Arabia, and several hospitals in UAE. Professor El-Hattab has conducted many clinical research projects, and he has more than 100 publications, several book chapters, and many presentations at scientific conferences.
Currently, MENA Organization for Rare Diseases is planning for its annual meeting: the MENA Organization for Rare Diseases Annual Meeting 2023, which will take place in Conrad Hotel Dubai from 3 to 5 March 2023. During this meeting, experts will deliver the most updated knowledge in presentations and workshops related to rare diseases in various medical fields such as neurology, cardiology, pulmonary, nephrology, endocrine, hematology, oncology, genetics, and ophthalmology. Individuals affected with rare diseases and their families will also participate by attending lectures, having a discussion with experts in rare diseases, and joining family group discussions. Laboratories, pharmaceutical companies, clinics and hospitals, academic institutions, and support and advocacy groups focusing on rare diseases will also participate through booths, symposiums, and workshops (https://www.menararediseases.com/).
