1st Conference on Rare Diseases of the Clinical Expertise Unit for the treatment of these pathologies
The Institut Guttmann and the Germans Trias i Pujol Hospital have held a day focused on minority diseases under the title "What do we do for these patients in the field of research, multidisciplinary care and treatment?". The act has been also the public presentation of the Functional Unit of Neuromuscular Diseases, unit of clinical experience that will offer a personalized care approach for each patient and where the medical team will be formed by a team of professionals from different specialties from neurologists, psychologists, dieticians, social workers, rehabilitation doctors, physiotherapists and occupational therapists, among others.
It is, therefore, a new partnership between both institutions to add experience and resources and offer a comprehensive care in a single medical appointment and throughout one morning. This joint initiative will save repetitive displacement of patients in the hospital, while increasing the efficiency of available resources and add synergies among the professionals who care for these patients.
The event, which was attended by more than 80 people including professionals, students and people affected or their relatives, was opened by Dr. Pilar Magrinyà and Rull, general planning director of the Health Department, and showed the entire treatment integral that is made to patients with these pathologies from the field of research with ELA, Steinert's syndrome, heredia-ataxia, dystrophy and post-polio syndrome; it also focused on the continuum of care with accompaniment and follow-up at home and where the new treatments and therapeutic innovations are heading, from brain surgery through substitution treatments or novelties in mucopolysaccharidosis.