People with rare diseases face significant challenges that arise from the infrequency of their medical conditions, such as limited knowledge about their diseases, long diagnostic journey, and inadequate clinical management and support. A disease is considered rare if it has a prevalence of less than 1 in 2000. Recent studies indicate that there are more than 10,000 different rare diseases. Although they are uncommon individually, collectively they affect more than 5% of the population.
The Middle East and North African (MENA) region include 24 countries with an area of 15 million square kilometers and more than 600 million population. This region shares cultural factors causing higher prevalence of rare diseases such the common practices of large family size, high maternal and paternal age, and high consanguinity rates.
MENA Organization for Rare Diseases was established in Dubai to serve and support people with rare diseases in the MENA region. The organization’s goals are to educate, connect, and support. Education and increasing awareness about rare diseases among healthcare providers, patients and their families, and the public can be achieved through scientific conferences, family meetings, social activities, and online tools. MENA Organization for Rare Diseases Annual Meeting, the largest event for rare diseases in the region, takes place yearly in February or March. Connecting people to exchange knowledge about rare diseases is achieved by establishing patient support groups and networks for healthcare providers. Supporting individuals with rare diseases is accomplished through helping patients receiving services from healthcare institutions and community services.
Dr. Ayman El-Hattab
Consultant Clinical Genetics and Professor,
College of Medicine University of Sharjah, UAE
Founder & President, MENA Organization for Rare Diseases,