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Rare endocrine diseases, Italy first in Europe with 20 centers – Healthcare

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Rare endocrine diseases, Italy first in Europe with 20 centers – Healthcare

For rare endocrine diseases, Italy is first in Europe with 20 accredited centres, but there is a strong gap in the South. In fact, in the South there are only three centers in Naples and one in Messina. There are 111 centers accredited by the European Union, and our country has a concentration of 20 of them, more than Germany with 15, France (10) and Spain (5).
5 years after the birth of the European Network for the treatment of rare endocrine diseases (Endo-Ern), the fourth edition of the congress ‘Let’s talk about Ma.RE in Sicily takes stock of assistance in Italy for this rare condition – A close-knit network for rare endocrine-metabolic diseases’, organized by the Endocrinology Unit of the Martino University Hospital of Messina, with the sponsorship of the Italian Society of Endocrinology (Sie) and the Italian Society of Pediatric Endocrinology and Diabetology (Siedp ). Rare endocrine diseases generate alterations in the endocrine system or metabolism and include rare thyroid cancers, pituitary, adrenal and pancreatic diseases. There are more than 150 but only 15 recognized in the essential levels of assistance and only for these there are national or regional registers. This means that “for all the others there is no Italian data and that patients cannot enjoy the rights recognized to rare patients”, explains Salvatore Cannavò, director of the Endo-Ern center of the Messina Polyclinic and ESI secretary. Furthermore, with regional federalism, “not all citizens have access to therapies in the same way, so in some cases patients are even forced to change residence” comments Andrea Lenzi, president of the Biosafety, Biotechnology and Life Sciences Committee, ordinary of Endocrinology at the ‘Sapienza’ of Rome and head of the Endo-Ern center of the Umberto I Policlinico.

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The differences between the Regions in taking care of patients “are also linked to the recovery plans of some of these and therefore to the impossibility of expanding the Lea with highly negative repercussions on patients – adds Maria Piccione, director of Genetics at the University of Palermo – It is therefore necessary to use the few tools we have to improve and reorganize patient care”. The double march between North and South “creates great difficulties for rare patients, not only in accessing diagnosis but also in taking charge”, warns Annalisa Scopinaro, president of Uniamo, the Italian Federation of Rare Diseases, while the director of the Observatory Rare Diseases (Omar), Ilaria Ciancaleoni Bartoli, underlines that the “fundamental thing common to all rare pathologies is the diagnosis. Indeed, it is only with the diagnosis that the patient has the possibility of accessing the most suitable treatment pathways to treat and manage his pathology. On this – he concludes – newborn screening certainly has a crucial importance “.

Now, also declares Maurizio Scarpa, head of the Regional Coordination Center for Rare Diseases Friuli Venezia Giulia and MetabERN coordinator, “we are moving into the second five-year period and are proceeding with the review of the members of the ERN and their functioning. There is an action that is starting these days and which has been envisaged by the European Commission to allow member states to identify strategies for integrating ERN members within the national health services”.

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