MENA Angelman Association opens in Dubai with aim to help patients
New group is first to serve those living with Angelman in region
The first patient organization for those living with Angelman syndrome in the Middle East and North Africa — a geographic region commonly known as MENA — has been established in Dubai, in the United Arab Emirates.
The MENA Angelman Association will cover more than 20 countries with an area of more than 15 million square kilometers and a population of more than 600 million people.
The new group is an initiative of the MENA Organization for Rare Diseases, established in Dubai to support people with rare disorders in Middle Eastern and North African countries. Sheikha Aisha bint Obaid Al Maktoum has been named the honorary president of the association.
“Because of the rarity of Angelman syndrome, most healthcare providers and the majority of society have very limited knowledge about this syndrome. … Raising the level of knowledge will enable the health sector to provide a higher level of health care and enable the community to provide greater support for affected individuals and their families,” the MENA Organization for Rare Diseases stated in a press release announcing the group’s launch.
Group to cover more than 20 countries in Middle East, North Africa
The first goal of the MENA Angelman Association is to heighten awareness of Angelman, a rare genetic disease thought to affect about 500,000 people globally. Key in reaching that goal is educating healthcare providers, and society in general, about the disorder and its effects, particularly on the body’s nervous system.
People living with Angelman syndrome can experience myriad symptoms, among them developmental delays, speech impairment, and intellectual disability, in addition to behavioral disorders, epilepsy, and movement problems.
The second objective of the group is to provide a supportive infrastructure for Angelman patients and their families, facilitating access to healthcare and rehabilitation services, in addition to educational and other resources. The organization also will support scientific efforts to find better treatments for Angelman and to help identify and recruit patients for clinical research.
The MENA Angelman Association, whose chair and vice president each have a child with Angelman, is preparing what will be called the MENA Angelman 1st Annual Symposium — the first conference in the region focused on Angelman.
Slated for Feb. 3, 2024, the symposium will feature Angelman experts from several countries who will discuss the latest treatment developments. The meeting will be part of the MENA Organization for Rare Diseases Annual Meeting and Exhibition 2024, to be held in Dubai from Feb 1-4 of next year.