Driving patient access for treatments targeting rare genetic disorders in the Middle East

By Ciaran Cassidy, S Analyst

Email: [email protected]

At the World Orphan Drug Conference (WODC) this year Dr Maryam Matar presented on the success of the UAE genetic disease association (UAEGDA), an organisation which she founded in 2006 and currently chairs. The UAEGDA is a non-governmental organisation focused on controlling genetic disorders prevalent in the United Araba Emirates (UAE) through health education, genetic screening1, and providing patients with the knowledge of accessible and affordable services to improve their quality of life. By conducting research, working with academia, and empowering patients through support groups and advocacy substantial progress has been made for these patients2.

Key examples of the association’s success covered were the establishment of registries for genetic disorders, genetic counsellors and increased training for physicians to recognise rare genetic disorders, along with improved legislation to help protect the rare disease community. The progress made by UAEGDA was encapsulated by a guest Nobel laureate as “a spot of light in the Arab world for Genetic research” back in 20123.

Presently certain countries in the middle east provide substantial opportunity for orphan drug and gene therapy manufacturers, an opinion we aired earlier this year at the European Conference on Rare Diseases and Orphan Products (ECRD 2020). Below is our poster detailing the key findings for oil-rich countries in the Persian Gulf (specifically the United Arab Emirates and the Kingdom of Saudi Arabia) and Turkey as markets for rare disease therapies.




3: Matar M. 2020. UEA: Effort for the prevention, diagnosis, and treatment of rare diseases in the UAE and Gulf: WODC 2020 27th August, Washington (virtual).

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