The Nemo Clinical Center (Neuromuscular Omnicentre), a unique healthcare model dedicated to the treatment, assistance and research on neuromuscular and neurodegenerative diseases, is 15 years old. The first office was opened in 2008 in Milan, at the Niguarda Hospital. That project, pioneering at the time, has now become a reference network with 7 offices throughout the country, almost 20,000 families taken care of, a technological research pole, over 80 clinical research projects in the last year alone and 112 children and adults who accessed drug treatments for spinal muscular atrophy (SMA) and the investigational drug pathway for amyotrophic lateral sclerosis (ALS).
The project – explains the Nemo Center in a note – was born and wanted by those who know and experience firsthand the clinical-assistance needs of ALS, Sma and muscular dystrophies. Rare and complex pathologies, which affect about 40,000 people throughout the country and for which there is a need for targeted and highly specialized care pathways, designed around the needs of the person and his family.
“The person experiencing a neuromuscular pathology has been able to put their experience of the disease at the service of making diagnostic, therapeutic and research pathways increasingly effective. This is the founding value that gave rise to Nemo 15 years ago and which has made it replicable in the territories over the years – declares Alberto Fontana, president of the Nemo clinical centers – A journey that tells the story of the opportunity to work together to address complex care needs and the challenges of scientific research. And on this journey, Nemo continues to always be the answer to that initial dream of wanting to put the desire for life first, beyond illness”.
Defined in 2016 by a Bocconi University research as “a necessary and effective approach with a view to providing services to people with highly complex chronic diseases and profitable for the entire civil society”, the Nemo Centers – continues the note – they are precisely the expression of the courage of a community of patients who have chosen to look beyond the limit, to seek the most effective answers together with the institutions and the clinical and scientific community. It is in fact thanks to the foresight of Uildm, Telethon Foundation, Aisla, the Sma Families association, the SLAnciamoci association and the Vialli and Mauro Foundation for research and sport, members of the Serena Foundation, the legal entity of the project, which started 15 years ago this path in alliance with the institutions.
The vision – remarked by Nemo – was that of a single healthcare model, based on the partnership between the public and the private sector, in a relationship of co-responsibility to share services and care projects within the national healthcare system. Thanks to all those who believed in the project, today Nemo makes 134 beds available to the neuromuscular community, 21 of which dedicated to outpatient and day hospital activities, a network of 370 professionals and in the midst of the health emergency the opening of the last 4 network locations. Multidisciplinarity is the heart of the treatment approach of the Nemo Centers: in fact, in each department there is a team of expert professionals who work together for the rehabilitation process, tailor-made for each child and adult who entrusts themselves to the centre. Then there are projects aimed at supporting continuity of care: the nurse coach; the clinical research units – the Clinical Research Center (Crc) and the Nemo Institute Neuromuscular Research (Niner) – and Nemo Lab, the hub exclusively dedicated to technological research on these pathologies. And again: the scientific dissemination and training actions, but also the educational projects activated thanks to the partnerships that have consolidated over the years, which make it possible to raise awareness of a new culture of social inclusion or to deal with issues related to well-being and improvement of quality of life.
Today the 7 branches of the network are called upon to respond to new challenges: scientific development on the knowledge of pathologies and pharmacological treatments; new standards of care, for pathologies that are changing their natural history; continuity in taking charge between the ward and living environments, with increasingly effective methods and relationships with the local area; quality of life, thanks to the support of technological research.
