MENA REGION
MENA Organization for Rare Diseases was established to serve and support people with rare diseases in the region of Middle East and North Africa (MENA).
People with rare diseases and their families 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 available for them.
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. Unfortunately, only 5% of rare diseases have available therapies.
The Middle East and North African (MENA) region includes more than 20 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 support and advocate for rare diseases in the region of Middle East and North Africa (MENA). The goals of MENA Organization for Rare Diseases are to educate, connect, and support.
EDUCATE
MENA Organization for Rare Diseases aims to educate, spread knowledge, and increase awareness about rare diseases among healthcare providers, patients and their families, and the public. This goal can be achieved through scientific conferences, family meetings, workshops, training programs, social media posts, and online tools such as electronic newsletters and educational webpages and videos.
CONNECT
MENA Organization for Rare Diseases aims to connect people to exchange knowledge and experience about rare diseases. This can be achieved by organizing social events and establishing rare disease databases and support groups to connect patients and families with rare diseases. We also establish databases and networks for healthcare professionals providing care for patients with rare diseases.
SUPPORT
MENA Organization for Rare Diseases aims to provide support for individuals with rare diseases and their families through connecting patients to healthcare providers and facilitating receiving services from community services and healthcare institutions such as hospitals, clinics, laboratories, and rehabilitation centers.