2023-05-30 15:55:40
Characterized by variable fatigability and muscle weakness in the affected muscles and fluctuating over time due to a transmission defect between the nerve and the muscle, autoimmune myasthenia affects between 56,000 and 100,000 people in Europe (more than 20 000 people in France), and its coverage remains unequal depending on the country. Indeed, several treatments are available but not in the same way in all countries.
“With this Day, we want to raise awareness of the often invisible but disabling symptoms of the disease. Simple movements can at times become difficult or even impossible for a myasthenic. In addition, for some time research has been moving a lot and new treatments are available. We want to make institutions aware of the need to standardize medical, social and psychological care throughout Europe. explains Annie Archer, head of the AFM-Téléthon’s Myasthenia Interest Group.
Treatments already available
In France, three biotherapies are currently available and are subject to early authorization by the French National Authority for Health: ravulizumab (Ultomiris®), efgartigimod (Vyvgart®) and zilucoplan. Their prescription is very framed and there are criteria that limit access for the moment. Knowledge regarding myasthenia gravis and the search for new treatments has accelerated this year. Nearly 70 clinical trials are underway or in preparation worldwide, including 10 in France and in particular at the Institute of Myology, in the “Myasthenia Gravis: etiology, physiopathology & therapeutic approach” team of Rozen Le Panse, supported by AFM-Telethon. The researchers have demonstrated, in two mouse models of myasthenia gravis with anti-RACh, the most common form of myasthenia gravis, that a monoclonal antibody directed once morest a protein, Interleukin-23, which plays a role in inflammation and immune defense, has benefits on the thymus, a gland located in the upper part of the thorax, the dysfunction of which is often the cause of the disease. A first that paves the way for future clinical trials.
This same team participates in the European MG-PerMed project, which aims to identify reliable biomarkers (genetic, cellular, etc.) to distinguish, before any treatment, forms refractory and non-refractory to a drug. The goal: to provide personalized, more effective and safer care, consisting in choosing for each patient the treatment that will be most beneficial to him, according to his characteristics and those of his disease.
Rozen Le Panse, Research Director at the Myology Research Center, at the Institute of Myology, explains myasthenia gravis in 1 minute
The AFM-Téléthon Myasthenia Interest Group, support for patients
Affected by the disease? The AFM-Téléthon Myasthenia Interest Group is made up of people affected by autoimmune myasthenia, but also by congenital myasthenic syndrome and Lambert Eaton myasthenic syndrome. It allows to be able to exchange, between peers, on the daily life with the disease as well as its medical care and therapeutic innovations. The purpose of the Interest Group is to help, support and inform patients and their relatives, but also to contribute to advancing knowledge regarding the disease, regarding life with myasthenia, and to improve treatment and in the care of people affected by the disease. In addition, the team brings the expectations and needs of patients to health authorities, the medical world and research.
All the information on the AFM-Téléthon Myasthenia Interest Group and how to join it: https://myasthenies.afm-telethon.fr/
Press contacts: Stéphanie Bardon / Marion Delbouis – 01 69 47 29 01 – [email protected]
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