More than 2,400 attendees turned out for the 19th annual event in Florence, Italy.

By Marianne de Visser, Wolfgang Grisold, and Steven L. Lewis

Prof. Benedikt Schoser outlines a roadmap for converting science into approved therapy during his presentation.

The World Federation of Neurology (WFN) Specialty Group on Neuromuscular Diseases held a successful International Congress on Neuromuscular Diseases (ICNMD) July 7-11, in Florence, Italy. The congress was hosted by Prof. Antonio Toscano and was supported by many Italian contributors. 

The event started with an inspiring Patients’ Day (See Patient Advocacy, Education, and Training), followed by teaching courses, including standing-room-only hands-on sessions, and a rich scientific program with plenaries, scientific lectures, free topics, and posters. In addition, the industry symposia, supported by pharmaceutical companies, provided excellent speakers and programs. 

The meeting of delegates was well organized. Fortezza da Basso, located within the 14th century walls of Florence, provided an excellent meeting site and offered space for breaks and interactions while enjoying delicious Italian ice cream. 

Social meetings, such as the opening event, featured the attendance of a representative of the city of Florence and an address from a patient representative. The networking event provided a pleasant atmosphere to continue neuromuscular conversations.

From left to right: Prof. Steven Lewis, WFN president, Prof. Marianne de Visser, acting WFN secretary general, and Prof. Wolfgang Grisold, WFN past president.

The WFN was represented by President Steven Lewis, Past President Wolfgang Grisold, and acting Secretary General Marianne de Visser. 

The neuromuscular field is moving forward, propelled by research, revealing new immunological, genetic, and molecular findings. Many (therapeutic) innovations have entered the clinical stage and increasingly contribute to a better future for neuromuscular patients.

Providing the trajectory between research, bedside, and other aspects of neuromuscular disease that attracts eminent speakers is a significant strength of the ICNMD.

Impressions

Prof. Alexander Grimm of the German NervClub gives a presentation on nerve surgery, reinnervation, and rehabilitation.

The scientific program was introduced with an inspiring and somewhat provocative lecture by Prof. Benedikt Schoser from Munich, Germany, titled “Redefining Muscle Disease Management: A Roadmap to 2030.” Prof. Schoser explained how the neuromuscular landscape is shifting from mainly supportive care to pathomechanism — targeted therapy. This is true for both acquired and hereditary neuromuscular diseases. 

Of course, many hurdles still need to be overcome. These include identifying appropriate biomarkers for early diagnosis and monitoring the course of the disease. We must also assure trial readiness, including natural history data, outcome measures, patient registries, and network infrastructure. 

Artificial intelligence (AI) can play an important role in diagnosis, outcome modeling, digital biomarkers, assisting target discovery, trial recruitment, and remote monitoring. However, information technology infrastructure is still lacking in many places. Data protection policy is frequently locally organized, and regulatory and ethical frameworks for clinical AI are just starting to take shape. 

Prof. Schoser also warned of the threat of reduced manpower capacity if novel therapies are approved and must be administered in-hospital. He proposed moving care to the patient, which requires the use of appropriate patient-reported outcome measures and connected safety and efficacy monitoring via wearables.  

Other splendid plenary lectures dealt with many topics, including:

• The paradigm shift in the treatment of chronic inflammatory demyelinating polyneuropathy (CIDP), presented by Dr. Pietro Emiliano Doneddu
• Myasthenia gravis, presented by Dr. Carolina Barnett-Tapia 
• ALS, presented by Dr. Pamela Shaw

Prof. Maurizio Leone presents an update on a paper by the WFN post-COVID work group.

Several lectures discussed the relationship between cancer therapies and the neuromuscular system. The plenary lecture by Dr. Yves Allenbach highlighted the complex mechanism of the side effects of immune check inhibitors. 

The event also featured a joint ICNMD-WFN session that included a paper by the WFN post-COVID work group. The paper, “Prevalence and Trajectories of Post-COVID-19 Neuromuscular Conditions: A Systemic Review and Meta Analysis,” was published in the Journal of the Neurological Sciences. It was presented by Prof. Maurizio Leone. The same session also included news on the globally important topic of leprosy, presented by Dr. Pedro Tomaselli, and emergencies of the neuromuscular system in India, presented by Dr. Sarath Menon. 

The program also included joint symposia with other societies such as the Peripheral Nerve Society (PNS), the World Muscle Society (WMS) (focusing on inequalities in access to treatments), and the WFN Autonomic Disorder Group. These symposia featured discussions on aspects of supportive and palliative care, mental health in neuromuscular diseases, aging of the neuromuscular system, and tailoring myasthenia gravis care for women. In addition, the German NervClub provided a view into the exciting world of nerve surgery, reinnervation, and rehabilitation. 

On the final day of the conference, one session was devoted to the aging and senescence of the neuromuscular system, including senescence, aging of nerves, and sarcopenia. 

The closing ceremony featured awards for the four best posters, summarized the meeting, and announced the next meeting, which will take place July 5-9, 2027, in Chiba, Japan. •

Associations outline their goals on Patients’ Day at the International Congress on Neuromuscular Diseases.

By Antonio Toscano and Wolfgang Grisold

The opening of the Patients’ Day forum at the 2026 ICNMD in Florence, Italy.

The opening of the 19th International Congress on Neuromuscular Diseases featured a dedicated session with the goal of identifying the key priorities in the management and care of neuromuscular disorders. 

Patients’ Day, which took place July 7, was supported by the World Federation of Neurology (WFN), the Italian Myology Association (AIM), Gruppo Italiano per lo studio del Sistema Nervoso Periferico (ASNP), and the Italian Federation of Rare Diseases (UNIAMO). It was dedicated to fostering dialogue between patient organizations and the scientific community. 

UNIAMO is the representative body of the rare disease community, with more than 200 affiliated associations. It has been working for 25 years to protect and defend the rights of people with rare diseases and their families. UNIAMO engages in ongoing dialogue with institutional representatives (ministries, the Agenzia Italiana del Farmaco, Istituto Superiore di Sanità and others), scientific societies, researchers, and private stakeholders, representing the concerns of people with rare diseases.

Prof. Wolfgang Grisold, Prof. A. Toscano, and Dr. Annalisa Scopinaro opened the event, with a presentation outlining goals.   

Patient’ Day started with an update by experts on current therapies of major neuromuscular disorders. These included:

• Motor neuron diseases (Prof. N. Ticozzi, Milan)
• SMA (Prof. G. Ricci, Pisa, Italy)
• Peripheral neuropathies (Prof. D. Pareyson, Milan)
• Muscle diseases (Prof. T. Mongini, TURIN, Italy)
• Neuromuscular junction diseases (Prof. V. Damato, Florence, Italy)
• Metabolic myopathies (Prof. A. Toscano, Messina, Italy)
• Rehabilitation therapies (Dr. A. Trabacca, Brindisi, Italy, and Prof. G. Siciliano, Pisa, Italy)

Subsequently, the patients’ associations that took part in the event presented themselves. They are: 

• FSHD Italia APS 
• AltroDomani 
• Gli Equilibristi HIBM 
• Parent Project APS 
• Associazione Italiana Charcot-Marie-Tooth 
• Gruppo Familiari Beta-Sarcoglicanopatie 
• Famiglie SMA APS ETS 
• AIGlico Associazione Italiana Glicogenosi 
• Collagene VI Italia APS 
• ACMT-Rete per la Charcot-Marie-Tooth ODV 
• UILDM 
• Consulta Malattie Neuromuscolari 
• GBS|CIDP Foundation International 

Dr. Antonio Trabacca explaining neuromuscular rehabilitation as part of the Patients’ Day forum.

During the discussion, they highlighted their achievements, but also their expectations and collaborative efforts.

AIGlico Associazione Italiana Glicogenosi is very interested in ensuring that newborn screening is available in all Italian regions and recommending that physiotherapy be continuously supported for patients with neuromuscular diseases to maintain a good level of autonomy and independence. The association also advocates psychological support for patients and their caregivers as well as increasing the availability of home-based services, either for specific therapies or for physiotherapy.

ACMT Rete per la Charcot-Marie-Tooth ODV aims to promote information and training projects (annual congresses, courses for physiotherapists, and an online course on Charcot-Marie-Tooth (CMT) for health care professionals). The group also encourages meetings and exchanges between people affected by the condition (for example, National CMT Day and the “Young People” project aimed at Generation Z).

GBS-CIDP Foundation International is committed to promoting timely diagnosis, access to appropriate treatments, and qualified care. It does this via the four pillars of its mission:

• Support for patients and their families, education, research, and advocacy.  
• Proposing main international programs aimed at defining shared standards of care to improve equity of access to treatment. 
• Raising awareness of rare immune-mediated neuropathies. 
• Promoting education for patients and health care professionals, strengthening the international network of Centers of Excellence, and consolidating collaboration with patient organizations.

Uniting the Associations

Prof. Antonio Toscano at the opening of Patients’ Day at the 2026 ICNMD.

The approach of the Neuromuscular Diseases Advisory Board (Consulta Neuromuscolare) is to build a network, bringing together the efforts of the 18 different associations working in the field of neuromuscular diseases, and to make overall care more consistent across the whole national territory. 

There are two levels of action. The first is regional. Regional delegates jointly carry out an assessment of the shared critical issues and the least well-met care needs. In all regions, this association calls for the establishment of a regional working table. At the central level, the members of the advisory board’s governing council seek ways to resolve issues or pursue initiatives that cannot be addressed at the regional level. These include, for example, issues that need to be examined at the Ministry or National Institute of Health level.

The main objectives of Consulta Neuromuscolare are to ensure that proper multidisciplinary care is achieved and to propose the diagnostic-therapeutic-care health pathway for all regional contexts. 

Patients’ Day was a great success, sharing recent achievements in the diagnostic and therapeutic fields, the effectiveness of innovative therapies, and the opinions of experts and association representatives. It also highlighted short- and long-term perspectives for new common projects that can improve the quality of life of patients with neuromuscular diseases and support their families. •

Prof. Antonio Toscano is congress president of ICNMD 2026, and Prof. Wolfgang Grisold is past president of the WFN.

A report on a presentation from the International Congress on Neuromuscular Diseases in Florence, Italy.

By Jorge A. Bevilacqua

Jorge A. Bevilacqua

Palliative care is an essential component of comprehensive health care systems; however, its availability remains severely underdeveloped and markedly inequitable across regions and income groups.^{1, 2, 3, 4} Although Europe and the Americas have the greatest concentration of palliative care services, approximately 80% of the global need occurs in low- and middle-income countries (LMICs), which account for only 30% of existing services. These substantial disparities underscore the urgent need to strengthen palliative care capacity and improve equitable access, particularly in LMICs.¹

Although medical science has advanced rapidly, health care systems have struggled to ensure equitable access to diagnosis, treatment, and comprehensive patient care. Neuromuscular diseases (NMDs) add a layer of complexity to the supportive and palliative care needs of affected patients.^5,6 

Diagnostic delay and misdiagnosis — resulting in unacceptable delays in accurate diagnosis, prognosis, genetic counseling, and appropriate care — are not unique to LMICs. However, their prevalence in these settings remains unjustifiably high. Addressing these challenges requires sustained commitment from health care systems and the implementation of coordinated strategies to improve access to appropriate care.

Approximately 40 million people per year require palliative care worldwide, 78% of whom live in LMICs. Yet only 14% of the global need for palliative care is currently met.² In high-income countries, the likelihood of receiving palliative care is approximately 50%, compared with only 4% in LMICs. This disparity is even greater for neurological and neuromuscular diseases.^1,2 In India, for example, only 1%-2% of the estimated 5.4 million patients requiring palliative care each year receive such care.^7,8

A similar picture can be observed in other regions of the world. In Egypt, although multidisciplinary care is increasingly available, families pay up to 90% of medical costs out of pocket, with physiotherapy representing the second largest financial burden. Patients living in cities with access to specialized multidisciplinary care, including physiotherapy, have also been shown to maintain ambulation longer than their rural counterparts.⁹ In a recent study from Latin America, out-of-pocket expenses for patients with myasthenia gravis were found to substantially exceed the minimum wage.¹⁰ 

Amyotrophic lateral sclerosis (ALS) is the neuromuscular disease most associated with palliative care. Increasing recognition of its benefits has led to recommendations for earlier and greater integration of palliative care into ALS management.^5,6,11 However, an international survey of 21 countries across six continents demonstrated significant disparities in access to ALS/motor neuron disease (MND) care. 

Economic, cultural, and religious factors emerged as important determinants of access. Several resource-limited countries had virtually no public awareness of ALS and extremely limited access to patient care. Interestingly, according to the report, “these results were often a reflection of whether a country was WHO-designated high-, middle-, or low-income.”¹²

These inequities disproportionately affect patients with rare neuromuscular disorders because their diseases often require lifelong multidisciplinary care and expensive interventions.⁶

The Main Critical Areas and Barriers

Several interconnected barriers create what may be termed a circle of neglect for rare NMDs in LMICs. Their low visibility at the organizational level results in limited awareness, inadequate disease registries, and insufficient inclusion in medical curricula. This contributes to a shortage of trained health care professionals and, consequently, limited investment in specialized infrastructure, logistics, and services. 

These deficiencies, in turn, contribute to delays in diagnosis and treatment. Lack of diagnosis also affects the perceived prevalence of these diseases, perpetuating their neglect. Supportive and palliative care form part of this same circle. Although many of the limitations are shared with other areas of medicine, they may be particularly consequential in NMDs.

Understanding Supportive and Palliative Care

Definitions of supportive and palliative care are frequently used ambiguously and are often conceptualized primarily from an oncological perspective.^13,14 Globally, palliative care can be described as active, holistic care for individuals experiencing serious health-related suffering. It focuses on preventing and relieving physical, psychological, social, and spiritual distress without intending either to hasten or postpone death.¹⁵

Supportive care encompasses a broader spectrum, extending across diagnosis, rehabilitation, survivorship, secondary prevention, and end-of-life care.^4,14 Within this framework, palliative care represents one component of comprehensive supportive care; thus, supportive care encompasses palliative care.¹⁴

This distinction is particularly relevant in chronic hereditary neuromuscular diseases and other nononcological conditions. Patients with chronic inherited neuromuscular disorders must live with the consequences of their disease, which can impose substantial physical, emotional, and financial burdens on patients, families, and caregivers. Patients may experience one or more of the following:

• respiratory insufficiency and cardiac complications
• dysphagia and dysarthria, with consequent nutritional and communication difficulties
• immobility, chronic fatigue, and pain
• psychological and existential suffering 

These challenges extend well beyond traditional neurological management and require comprehensive supportive care throughout the disease trajectory.^5,6,16

Systemic and Infrastructural Barriers

In most LMICs, specialized services are largely concentrated in tertiary referral centers, typically located in major cities and often far from the patients who require them.^17,9 Patients may therefore need to travel long distances to access specialized care, while primary and secondary health care systems remain poorly equipped to manage chronic neuromuscular diseases. Consequently, patients frequently reach referral centers without an adequate diagnosis and at advanced stages of disease, when therapeutic options are increasingly limited.

This creates a cascading failure: Already scarce tertiary centers become overburdened with patients with complex or advanced disease, families face catastrophic out-of-pocket expenses, and the health care system becomes increasingly inefficient.¹⁷ Some of these pressures could be mitigated through better distribution and optimization of supportive and palliative care services closer to patients and their communities.

Diagnostic Delay and Misdiagnosis

Although approximately 15 million people worldwide live with inherited NMDs, access to precision molecular diagnosis remains highly unequal. Modern DNA sequencing enables accurate diagnosis and, increasingly, access to gene-specific therapies.¹⁸ Nevertheless, most affected families live in LMICs, while genetic reference databases remain heavily biased toward populations of European ancestry and those from developed regions. Molecular diagnosis therefore remains inaccessible to many patients.^19,20

As noted above, delayed diagnosis postpones appropriate therapy while potentially exposing patients to ineffective or even harmful treatments.

This challenge is directly linked to workforce limitations. Shortages of trained professionals exist across many developing countries because of factors related to training pathways, financial pressures, and increasing demand for specialized expertise. In supportive and palliative care, contributing factors include inadequate education in neuromuscular medicine, limited awareness of palliative care as a professional field, fragmentation between specialties, and insufficient multidisciplinary collaboration.^17,21,22 As a result, referrals are delayed, symptom control is inadequate, and tertiary hospitals become increasingly overburdened.

Limited Access to Therapy

Access to therapy deserves particular attention, as discussions often focus on novel, high-cost treatments. However, in LMICs, access is also limited for basic and essential interventions, including supportive and palliative care.³⁷

This limitation becomes even more evident when access to modern therapies is considered. Highly effective treatments now exist for spinal muscular atrophy (SMA), Duchenne muscular dystrophy (DMD), Pompe disease, and several autoimmune conditions, including immune-mediated neuromuscular junction disorders and myopathies.²¹ Yet these therapies remain inaccessible to most patients worldwide.^10,19,23

There is a widespread perception within both the medical and patient communities that when a disease-specific therapy becomes available, supportive and palliative care become less necessary. This notion is incorrect. On the contrary, the introduction of a disease-modifying therapy increases the importance of optimal supportive care to give patients the best possible chance of benefiting from treatment.

Moreover, the existence of novel high-cost therapies may make supportive and palliative care even more relevant when advanced treatments cannot be accessed. In other words, sophisticated, high-cost therapies cannot achieve their full potential when delivered in communities lacking adequate supportive care.

Why NMDs Require a Different Approach

NMDs should not be viewed solely as rare neurological disorders. They are chronic, progressive conditions, often associated with a shortened life expectancy. They require continuous multidisciplinary management that addresses physical, psychological, social, and existential needs.^5,6

NMDs require a model of supportive and palliative care that differs from systems derived primarily from oncology, which remain the prevailing models in many developing countries.^13,14 

NMDs differ substantially from cancer because they often follow prolonged disease trajectories, involve progressive disability rather than a predominantly terminal course, and require long-term ventilatory, nutritional, rehabilitation, and communication support. They may also present unique psychological and mental health challenges, particularly when cognitive impairment occurs in certain NMDs.^5,6,18

Consequently, cancer-centered models should not simply be transferred to NMD without appropriate adaptation.

Promising Strategies for Improvement

Several approaches may help overcome these challenges, including community-based models of care. Community- and home-based care can substantially improve access while reducing hospital utilization. The Kerala “Neighborhood Network” in India provides an example of a volunteer-supported model of home-based palliative care.²⁴ Telemedicine and wearable technologies may also provide opportunities to extend specialist expertise to underserved regions.²⁵

Education and Professional Development

Education and professional development are essential to achieving sustainable improvements in neuromuscular care. Based on the author’s experience in Latin America, examples of specialized educational initiatives in the neuromuscular field include the Paris Summer School of Myology (AcadeMYO).²⁷ This initiative subsequently inspired similar programs adapted to different regions, including the Euro Latin America Summer School of Myology (EVELAM),²⁸ which promotes education in rare NMDs, including the principles of supportive and palliative care and practical workshops.

Scientific societies can also contribute by organizing educational and scientific meetings, such as those promoted by the Latin American Society of Neuromuscular Disorders (SOLANE),²⁹ and by supporting specialized training programs such as the World Muscle Society SEED Project.³⁰ Collectively, these initiatives have trained thousands of health care professionals across Latin America and other developing regions.

Precision Diagnosis and Genomic Diversity

Regional genomic initiatives such as Latin Seq³¹ and sponsored diagnostic programs demonstrate how international collaboration can expand access to molecular diagnosis while increasing the representation of diverse populations in genetic databases.^32,33 Such projects can contribute to a better understanding of the genetic profiles of patients with NMDs in LMICs, facilitating earlier diagnosis and enabling more appropriate disease management.^34,35,36

Integrated Multidisciplinary Care

All of these approaches should ultimately converge toward what is clearly indispensable: integrated multidisciplinary care. Effective neuromuscular care requires coordinated collaboration among neurologists, rehabilitation specialists, palliative care clinicians, respiratory physicians, nutritionists, psychologists, speech and language therapists, nurses, and social workers. Depending on the context, patient associations, nongovernmental organizations, and other stakeholders can also play an important role.

Conclusion

Although remarkable therapeutic advances have transformed the outlook for several NMDs, these innovations have also widened disparities between countries with and without access to precision medicine. As a result, supportive and palliative care has become more important.

Treatment does not necessarily equal cure. Health care systems therefore have an ethical responsibility to provide integrated, patient-centered supportive care throughout the disease trajectory. Achieving this goal requires earlier diagnosis, multidisciplinary collaboration, expanded education, stronger health policies, and equitable access to both modern therapies and high-quality supportive care.

In essence, supportive care for NMDs in LMICs is a field in transition. Although it remains severely underresourced compared with high-income countries, there is growing recognition of the problem and increasing momentum toward practical, culturally adapted solutions aimed at maximizing quality of life despite resource limitations. •

Jorge A. Bevilacqua, MD, PhD, is professor at the Departamento de Neurología y Neurocirugía, Hospital Clínico Universidad de Chile. 

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