Italian Laminopathies Network

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The Italian Laminopathies Network (NIL), which we co-founded in 2009 with the CNR-IGM in Bologna, and to which several research teams from different laboratories or medical centres from all over Italy belong, is a multidisciplinary working group involving not only different specialists, but also different professions. In particular, this Network stems from an EU-funded project aimed at a comparative study of laminopathies. However, the project's duration of only two years would not have allowed for a more substantial and continuous study of these diseases as a whole, and it is precisely for this reason that, during one of the worldwide scientific meetings in which we participated, we came into contact with the project coordinators and decided to support it with our own resources, trying to involve as many Italian centres as possible. There are currently around twenty centres and teams involved in this major Italian project. In particular, in the comparative study of laminopathies, the NIL aims to:

 
Creating a network of collaboration between basic scientists and researchers

So that they can exchange data, compare notes with each other, give each other advice and decide together what kind of research to carry out, what slant to give it and what to focus on, often leading to joint work. This allows researchers to make the most of their skills and specialisations in several shared projects, avoiding investing resources and energy in 'duplicate projects' and at the same time following a common line that allows a faster and more efficient study of these very rare diseases. Currently, the research on progeria carried out by the various research teams that are part of the network is increasingly gaining importance in the international context, attracting the attention of many of the world's leading experts on progeria, and thus becoming a reason for close collaborations as well as an authoritative voice in proposing possible treatments for this disease.

 
Creating a network of doctors that is multidisciplinary and covers various specialisations to offer the most comprehensive support possible to laminopathic patients

In fact, rare disease patients often do not find a medical team of reference and are forced to move between one specialist and another who often, not being clear about the disease itself, but only looking at the part of their own competence, propose conflicting ideas regarding the care and treatment to be given to patients. By overcoming this problem, not only does the NIL guarantee patients a network of centres to turn to throughout Italy, but it also provides a whole medical team, the product of years of experience in the field, which discusses each patient's case together and is able to guide them through daily life, treatments, and the sudden eventualities that these diseases entail.

 
To create a network of associations concerning the various laminopathies

that can support the cause and scientific and medical research. In fact, associations can be a not inconsiderable help for several reasons: thanks to their fund-raising work, they can contribute financially to research projects that would otherwise have no way of being expressed (in this regard, let us remember that the funds for research are still too little compared to the costs of research); they can be a valid support in disseminating science and thus in making doctors, researchers and the general public aware of these very rare pathologies, making them, if not less rare, a little less orphaned; being the first to be contacted by patients and being in close contact with them in the search for solutions, often being approached by centres or innovative companies offering original ideas for the daily or medical life of patients, they can be a really strong network of contacts and therefore a source of productive connections that researchers and doctors, given the full-time work they do, would not have the opportunity to manage.

Associations are to all intents and purposes a direct link between the scientific world and the general public, and can turn the spotlight on issues that, being very rare, are considered to be of little public interest, but which, given their complexity, can have a strong impact on everyone's life.

 

 
Creating a network of patients who can interact with each other to exchange experiences

Life advice and support in coping with the disease. This is not only helpful for patients and their families, but also of great importance for doctors and researchers: patients, in fact, as well as offering valuable support in contacts between doctors and younger, and therefore more inexperienced, patients, can also give good pointers towards which research can be directed thanks to the experiences they have had in living with the disease themselves.

 

At present, the NIL, besides being active throughout Italy, is also the protagonist of broader collaborations both in Europe and globally, increasingly becoming a reference model as an efficient working group with research of high scientific relevance.