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.
