Under the honorary presidency of Sheikha Aisha bint Obaid Al Maktoum, the MENA Angelman Association, which represents the first association concerned with Angelman syndrome in the Middle East and North Africa (MENA) region, was launched.
Angelman syndrome is a rare genetic disease that mainly affects the nervous system, causing developmental delay, speech impairment, and intellectual disability, in addition to behavioral disorders, movement disturbances, and epilepsy.
Because of the rarity of Angelman syndrome, most healthcare providers and the majority of society have very limited knowledge about this syndrome. From here, the MENA Angelman Association set its first goal, which is to spread awareness and knowledge about this syndrome among health care providers and all segments of society, believing that 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 second objective of the association is to provide support and facilitate access to health and rehabilitation services and social services for people with Angelman syndrome, and educate and support family members to help them care for their affected children. The association also aims to support research seeking to find treatments that help people with Angelman syndrome and to facilitate participation of affected individuals in research.
The association's services will cover the entire MENA region, which includes more than 20 countries, with an area of more than 15 million square kilometres, and a population of more than 600 million people. Dubai will be the headquarters of this association, to enhance the pioneering role of the UAE, which seeks to lead in all fields, including the medical field, especially with regard to people of determination and supporting research and innovation.
The wise policies and sound vision of the rulers of the UAE have created a positive and supportive environment for the establishment of such associations that seek to support our people and extend a helping hand to all countries in the region. In support of people of determination and rare diseases, Sheikha Aisha bint Obaid Al Maktoum has accepted the position of Honorary President of the MENA Angelman Association.
It is worth noting that this association is one of the initiatives of the MENA Organisation for Rare Disease, which was established in Dubai to support rare diseases in the Middle East and North Africa. MENA Organisation for Rare Disease was founded by Dr. Ayman El Hattab, Consultant Clinical Genetics and Professor at the College of Medicine, University of Sharjah and Engineer Mais Kanan, the mother of a child with a rare disease. The MENA Angelman Association is chaired by Dr. Fida Dyab, who is the mother of a girl with Angelman syndrome and one of the main poles in the field of raising community awareness and support people of determination and rare diseases. The position of the vice president is occupied by Mahina Sultan Alketbi who has a daughter with Angelman syndrome. Nahed Saeed holds the position of public relations officer in the association, and she also has a son with Angelman syndrome.
The MENA Angelman Association is currently preparing the first regional conference specialised in Angelman syndrome, which will be called “MENA Angelman 1st Annual Symposium” and will include a number of expert speakers and participants from several countries. The latest developments related to this syndrome and research seeking to find treatments for Angelman syndrome will be discussed. This conference will be held in Dubai on 3rd February 2024, and will be part of the MENA Organisation for Rare Diseases Annual Meeting and Exhibition 2024, which will be held in Dubai from 1st to 4th February 2024.
News Source: Emirates News Agency