More than 200 people attended the XXXV Congreso Nacional de Enfermedades Neuromusculares in Madrid, including health professionals and people affected by these conditions. Family members and representatives of patient organisations also took part. Organised by Federación ASEM, the meeting examined scientific progress and persistent gaps in care.
Those gaps include access to public rehabilitation and coordination among specialists. Federación ASEM president Manuel Rego named diagnosis and integrated care as priorities for the collective. He also framed rehabilitation access as a rights issue, saying that maintaining patients’ abilities meant progress in rights.
The practical challenge is continuity. Neuromuscular conditions may require care from several specialists, and the congress discussed a case manager’s role in connecting families with clinical teams. Andrés Nascimento of Hospital Sant Joan de Déu de Barcelona addressed that role. Javier Mascías of Hospital La Paz-Carlos III-Cantoblanco warned that contradictory messages from professionals can make patients feel insecure.
Research was another focus, particularly precision therapies and the prospect of new treatments. Cristina Domínguez, a neurologist at Hospital Universitario 12 de Octubre, said there were grounds for optimism about approvals in the coming years. Ana Camacho, head of its paediatric neurology section, discussed patient safety in clinical trials. María Jesús García of Hospital Universitario de Basurto stressed genetic counselling and earlier detection, including through neonatal screening.
Belén Pérez, deputy director of the Centro de Investigación Biomédica en Red de Enfermedades Raras (CIBERER), said cooperation between researchers and healthcare professionals was key. She also pointed to the role families play in that work.
Care needs extend beyond diagnosis and treatment. Sessions covered pain management and respiratory complications. They also addressed dysphagia, or difficulty swallowing. Xoán Miguéns Vázquez, head of rehabilitation at Hospital Vithas Vigo, argued that pain treatment should reflect its characteristics. Clinicians from Hospital Universitario 12 de Octubre discussed respiratory support and care designed to preserve patients’ autonomy.
María Bielsa, a doctor specialising in phoniatrics and director of the Foniatría y Logopedia centre in Talavera de la Reina, described swallowing as a complex process involving many muscles. She stressed the need to spot small changes early and anticipate complications.
Social support was also on the programme. Speakers explained the separate procedures for recognising dependency and disability, covering the paperwork and regulatory changes. Perpetua Casas of ASEM Castilla-La Mancha and María Careaga of AEPMI took part. Laura Cárdenas of Proyecto Alpha also joined the discussion. A patient forum considered personal assistance, while a separate family session addressed care and self-care.
The congress also gave patient organisations a role in discussions with public authorities. Before the event, Red ASEM brought together representatives from its 37 federated organisations. Staff and volunteers also took part. María Fernández García, deputy director general for healthcare quality at the Ministry of Health, described these groups as interlocutors for administrations. She said a draft law on patient organisations envisaged greater participation in health-system decisions; the source material does not say that the bill has become law.
The congress’s focus on care pathways forms part of wider discussions about the health system, including private-sector doctors seeking written contracts and stronger bargaining power. At the Madrid meeting, students from the University of Salamanca’s Facultad de Medicina also presented a project built around contact between medical students and patients.
