By Rasha El Sherif, Section Editor, Myology developments across the world

The emergence of the new era of novel gene modifying therapies has significantly impacted myology development in Africa and the Eastern Mediterranean (EM) region. The national authorities' recognition of the importance of research in neuromuscular disorders (NMDs) and patients' access to the SMA therapies in Egypt, Jordan, and Lebanon brought hope for patients and caregivers and motivated young researchers and doctors to apply for national & international fellowships and research grants in myology.

The scarcity of resources and networking has been challenging in Africa and the EM countries, yet the region's high rate of consanguinity and high population have challenged some NMDs, leading to collaboration with international Institutes.

Tunisia

In Tunisia, the Ben Hamida group played an essential role in discovering sarcoglycanopathies. Ben Hamida and Fardeau, in a symposium in Venice in 1980In in 1983, reported 93 patients belonging to Tunisian inbred families. 

Egypt

In Egypt, later in the nineties, the vision of Anwar el Etribi Head of Neurology dept. Ain Shams University on myology development in Egypt led to twenty years of collaboration with Nonaka and Nishino group in NCNP, Japan, and a group of well-trained Egyptian NM specialists emerged.

First was Nagia Fahmy, prof. Of Neurology, who established the first muscle pathology lab and currently leading the national SMA project. In my own role as Assistant Prof. at NewGiza University (NGU) and an active member in WMS after receiving a fellowship in NCNP,  I worked to establish the first neurogenetics lab dedicated to genetic diagnosis of dystrophinopathies at that time in Egypt. I am now working in the national Egyptian reference Genome Project on MDs and started the muscle research and Biobank in collaboration with Prof. Ahmed Ihab in NGU began to the first muscle Biobank in Egypt.

Recently some young doctors are keen on multidisciplinary care and NMD research; Heba Rashed, Prof. of Neurology, received a fellowship in Mayooclinic, USA and pioneering in ALS research, and other doctors in Zagazig, New Giza, Cairo, Minia universities, Egypt center for research & regenerative medicine ECRRM, and MYO-CARE Foundation.

Jordan

In Jordan, Amira Masri, Prof. of child neurology at the University of Jordan, has excellent work in improving the clinical research in MD, from DMD clinical trials to the SMA patients' access to SMA therapies and Mohamed Shboul Prof. Human Genetics neurology Depts in the Jordan University of Technology and science is leading in the genetics of MD and have collaborative work with New Giza University research & neurology Depts in Egypt.

Lebanon

There is an excellent effort in NM research and patient care in Lebanon. Duchenne and Pompe disease patients could receive treatment entirely covered by the MOH. There is an ongoing active study on SMA patients which provides therapy for affected children. Among the pioneer myologists in Lebanon and active WMS members are Riyad Khoury, Head of neuromuscular pathology who focuses on the role of mitochondrial metabolism in the inflammatory process, and the PI of research projects assessing the epidemiology of MD in the Lebanese population. And Hicham Mansour, Prof. of NM pediatrics at Balamand University - Saint George University of Beirut.

Senegal

In West Africa, many patients, and families with NMDs in Senegal in West Africa and neighboring countries because the limited access to muscle biopsy studies and genetic testing has been a significant obstacle to the development of NMDs centers in the region. Currently, Senegal is one of the first west African countries to develop NMD centers, and this is thanks to the efforts of Prof. Pedro M Rodríguez Cruz. At the Centre for Genomic Regulation, Barcelona, Spain, he leads a clinical research program in NMDs, Department of Human Genetics, Dakar, Senegal. He is involved in clinical care and recruitment of participants for research and genetic studies, as well as the Biobank. This is in collaboration and with the support of Prof Amadou Gallo Diop, Head of the Neurology Dept. at CHNU de Fann in Dakar, and Prof Moustapha Ndiaye, Head of Paediatric Dept.

Role of the WMS

The role of WMS has been evident in initiating and providing opportunities for networking and exchanging expertise in the world and our region. The WMS started this website section to help highlight and support myology developments worldwide. One of the WMS initiations is the scientific support for the regional neuromuscular genetics meeting hosted in Cairo, Egypt, by the New Giza University research centre and MYO-CARE Foundation 4th- 6th of November 2022. The scientific committee has myologists from Six Egyptian Institutes, Ain Shams University, Tanta University, ECRRM, NEW GIZA, Cairo University, and Zagazig, three regional experts from Lebanon and Jordan, and three WMS executive board members who volunteered for this work.

Please visit our website, https://nmgc2022.com/

Registration is free for all NMDs medical professionals and postgraduate students.


 

 

Published on 5 August 2022.

Related

08 Aug 2022 Myology Expert: Heba Rashed

05 Aug 2022 Myology Expert: Hicham Mansour

04 Aug 2022 Myology Expert: Pedro M Rodríguez Cruz

This article is presented by the Myology developments across the world Committee.

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