NAPLES – The doors of the Pizza Village Napoli 2024 have opened and, this year, the event calendar at the Mostra d’Oltremare was inaugurated by #AperiPizzaRara. An event in which pizza, a symbolic dish of Italian gastronomic tradition throughout the world, has also become the means to keep the debate on rare diseases alive, starting with the value of correct nutrition for the management of these pathologies. The #AperiPizzaRara event is organized by the Campania Region Rare Diseases Coordination Center with the non-conditioning support of Chiesi Global Rare Diseases and has the objective of creating a moment of discussion between clinicians, nutritionists and, above all, those living with a disease rare, so that we talk more and more about these pathologies which, at a global level, remain a public health priority, above all because they often lack adequate care and treatments. ‘The Coordination Center for Rare Diseases of the Campania Region was created to offer the support and all the necessary information to patients suffering from rare diseases and their families – said Chiara De Stasio, Helpline and Communication Manager of the Coordination Center in a note Rare Diseases Campania Region -. The staff works every day to be a point of reference not only for patients, but also for doctors, hospitals, local health authorities and associations, collecting their requests and providing effective solutions. The Center is committed to promoting timely diagnosis, identifying suitable hospital facilities for certification and taking care of patients, offering all the necessary support. Patients may feel discouraged or helpless. The Campania Region Rare Diseases Coordination Center (CMRC) is available to listen to them and advise them along the way. Clinical conditions that affect up to one in 2,000 people are defined as “rare”. To date we know of over 6,000 rare diseases that affect 300 million people worldwide, with over one million cases in Italy. This rarity complicates the treatment process: by delaying the diagnosis, which comes following the exclusion of the most common diseases, or due to the unavailability of a specific treatment, the research and development of which is made complex due to the limited availability of data . Speaking about the link between pizza and rare diseases, Giuseppe Limongelli, Director of the Rare Diseases Coordination Center of the Campania Region, spoke. ‘Apparently – he explained – we are talking about two opposite worlds: the best known and most requested food in the world, a UNESCO heritage site, and some pathologies which, because they are not very frequent, are considered not only rare, but “orphans” of interest. Yet, it is precisely from this apparent contradiction that the “Pizza Rara” project was born, which wants to make us reflect on two fundamental aspects. The first is that rare diseases are much more frequent than we believe and that, for this reason, it is important that there is information and training on the matter. The second is that pizza is truly a complete food for everyone, as long as the ingredients are carefully chosen. Otherwise, even pizza can become a problem, both for patients with prevalent diseases (diabetes, cardiovascular diseases) and with rare diseases (in particular, metabolic diseases). Hence the importance of nutrition science, which can truly guide each of us’s good choices at the table. In support of rare patients, but not only, nutrition plays a fundamental role. As reported by the World Health Organization, a correct diet is not only a very valid prevention tool, but is also an ally for the management and treatment of many pathologies. For some metabolic genetic diseases, for example, the diet becomes a real form of precision medicine: although it does not cure the metabolic defect that causes the disease itself, it however contributes significantly to alleviating its effects. ‘The nutrition of patients suffering from diseases is an important prognostic factor – said Francesca Dongiglio, Nutritionist at the Coordination Center for Rare Diseases of the Campania Region -. In all situations in which weight loss occurs and/or with clinically relevant signs, nutritional support is indicated. In some rare diseases, nutrition helps to improve metabolic balance by providing controlled quantities of all macro and micro nutrients, even in situations that require the use of specific dietary products or different types of nutritional support. It is essential to reiterate that every pathological condition, especially a rare disease, requires the utmost attention and commitment to guarantee adequate therapies and support for patients and their families. With this rationale, and thanks to the collaboration of the professionals of the Campania Region Rare Disease Coordination Center and an exceptional pizza chef like Errico Porzio, a special pizza was born, the MaRa pizza (which takes its name from the initials of MA-lattie and RA-re), but also a reference to the history of our Pizza Margherita. In fact, in the Anglo-Saxon world Mara also takes on the meaning of “lady of the sea” (Naples). This is because in Ireland Mara is the equivalent of the name Mairead (i.e. Margherita in Italian) in English. MaRa pizza is destined to conquer even the most demanding palates, thanks to the skilful combination of simple and tasty ingredients. But be careful. The real, great, secret of MaRa pizza is that traditional yeasts are not used in its preparation: and this is both to avoid inflammatory states and possible interactions with ongoing pharmacological therapies. Yeast-free, but not tasteless because the special ingredients of MaRa pizza are: buckwheat flour. Gluten-free, composed of 10% water and 10% dietary fibre, as well as being rich in vitamin E and the B vitamins necessary for the proper functioning of the metabolism, it contains amino acids such as tryptophan, methionine and lysine. However, above all, it is a good source of fibre, which helps protect the health of the intestine, promoting its regular functioning and removing toxic substances, and cardiovascular fibre, helping to reduce cholesterol levels in the blood. Sea water. A food product created through a cold treatment of sea water which is first allowed to sediment and then filtered to eliminate microplastics and other coarse elements and finally purified with a UV ray treatment. The dough prepared with sea water, in addition to having greater digestibility, has a lower percentage of sodium and a higher content of micro and macronutrients compared to doughs prepared with traditional flour, water, yeast and salt. Pecorino or parmesan. Naturally lactose-free, they are ingredients that give flavor without accentuating, like other cheeses with lactose, the gastrointestinal symptoms typical of some rare diseases. “Blue ribbed” tomato. Rich in anthocyanins, it boasts an antioxidant, anti-inflammatory, anti-aging and anti-free radical action for the benefit of our body’s cells. Representatives of some local institutions also took part in the event, demonstrating how much the topic requires collaboration between the healthcare, academic, political and private worlds. ‘There are almost 10,000 Rare Diseases and for the vast majority there is no treatment available. At Chiesi Global Rare Diseases we feel called not only to offer innovative therapies and solutions through research and development programs for those communities where few or no therapeutic alternatives exist, but also to consider all the daily needs of patients and their families – said Alessandra Vignoli, Head of Mediterranean Cluster, Chiesi Global Rare Diseases -. We are thrilled to support initiatives such as #AperiPizzaRara, a project that fully reflects our commitment to taking care of the patient in every moment of their daily life in line with our approach to creating shared value and we offer ourselves as an active partner of the Health System to build together a more holistic approach to support the rare disease community.’ – Italpress photo – . fsc/com 17-Jun-24 10:36