Alleanza pugliese per la Miastenia Grave

Monday, May 5, 2025, starting at 9:30 AM, a virtuous alliance from Apulia has scheduled a meeting at the Nicolaus Hotel in Bari to discuss the highly delicate topic of **Myasthenia Gravis**. The project was initiated to promote maximum collaboration among specialist doctors, patient associations, regional pharmaceutical services, healthcare companies, and institutions with the goal of addressing in a coordinated manner the diagnosis and management of individuals with Myasthenia Gravis, an autoimmune neuromuscular disease affecting about 800 people in Apulia, 15,000 in Italy, and 100,000 in Europe.

Raising awareness about this condition is very important, notes **Dr. Claudia Laterza**, Pediatrician, Palliative Care expert, and former consultant for the Rare Diseases Coordination of AReSS Puglia: "This conference is organized as a follow-up to a shared process summarized in a document containing operational guidelines to enhance regional resources and ensure equitable and appropriate management of Myasthenia Gravis. The disease can strike at any age, with a peak in men aged about 50-60 and women aged 30-40, who experience a significant diagnostic delay. Early diagnosis and appropriate management," continues Dr. Laterza, "allow for the avoidance of prolonged physical and psychological suffering, improving the individual and familial quality of life. During the conference (with ECM credits) on May 5, care pathways, patient experiences, hospital-territory integration, opportunities offered by digital health, and any other interventions that could contribute to the management of Myasthenia will be explored.

As explained by neurologist **Dr. Paolo Emilio Alboini**, Medical Director at the IRCCS Ospedale Casa Sollievo della Sofferenza in San Giovanni Rotondo, "Apulia has very precise and structured pathways in the field of rare diseases. Added to the great attention from the institutions are the new medical-scientific knowledge that allows for an even better rationalization of available resources. Over the last five years," continues Paolo Emilio Alboini, "some new therapies have been enabling a paradigm shift, returning patients to a normal condition prior to the illness without the severe side effects that standard therapy entailed until a few years ago, with a positive impact on the economic sustainability of regional healthcare systems."

Myasthenia Gravis is now recognized as a rare disease, with access to specific protections in terms of diagnosis, treatments, exemption from healthcare costs, work rights, and economic support. Therefore, it is essential that patients are adequately informed and supported on the healthcare, welfare, and social levels.

The “Apulian Alliance for Myasthenia Gravis” aims to overcome territorial inequalities and ensure fair access to appropriate treatments and simplified care pathways across the entire regional territory, in line with the principles of equity and the right to health.

Join us on May 5 at Via Cardinale Agostino Ciasca 27. Registration is mandatory at this link: https://iscrizioni.meeting-planner.it/cmsweb/Login.asp?IDcommessa=01/25/0067&Lang=IT
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