Adnkronos (Adnkronos) – The traveling campaign 'CL3AR: clear objectives for the health of your kidneys', a project by Sobi Italia and sponsored by the Progetto Ddd Ets patient association and the scientific societies FIR, SINEPE, and SIP, concluded in Piazza Mastai in Rome, after stops in Milan, Bari, Turin, Bologna, and Palermo. The campaign's aim was to raise awareness of the importance of kidney health, which is still too often underestimated, and particularly of rare kidney diseases.
In Europe, the initiative's promoters explain, a disease is defined as "rare" if it affects fewer than 5 in 10.000 people. Rare kidney diseases are a heterogeneous group of genetic, immune-mediated, or complement-related disorders that damage the kidneys. People living with a rare kidney disease account for less than 5% of the total number of patients with chronic kidney disease.
Chronic kidney diseases, especially rare kidney diseases such as C3 glomerulopathy (C3G) and primary immune complex-induced membranoproliferative glomerulonephritis (Ic-Mpgn), are often insidious because they are invisible and silent in the early stages of the disease, with symptoms that tend to be overlooked because they are confusing. Consequently, many people are diagnosed late, when their kidneys have already suffered irreversible damage; early diagnosis therefore remains crucial for improving outcomes, prompt intervention in disease management, and reducing the risk of progression to kidney failure.
The CL3AR campaign aimed to raise awareness and inform about these diseases through a journey across Italy that began in May and ended yesterday.
A journey of information, as described in a press release, involved the Progetto Ddd Ets patient association, scientific societies, and clinicians from the relevant nephrology centers. Each stop and each city offered an opportunity to exchange ideas with the public to raise awareness of these still little-known diseases and their associated risks, not least the impact of rare chronic kidney diseases on the lives of patients, both adults and children, and their caregivers. This has a tangible impact on quality of life and daily life, ranging from emotional and psychological aspects to social, work-related, and economic aspects. The issue of awareness takes on even greater importance when it comes to rare chronic kidney diseases, which can have a subtle onset and remain difficult to recognize for a long time. Among these, C3G and pIc-Mpgn can initially present with symptoms that are not always easily attributable to a specific pathology. Prompt recognition of any alterations and early diagnosis are therefore essential to be able to intervene promptly in disease management and reduce the risk of progression to kidney failure.
“C3G and primary Ic-Mpgn are two different ultra-rare kidney diseases that share a common problem: excessive activity of the C3 protein in the immune system,” explains Giuseppe Grandaliano, full professor of Nephrology at the Agostino Gemelli University Hospital Foundation IRCCS, Catholic University of the Sacred Heart in Rome. They affect males and females equally, are generally diagnosed during childhood or adolescence, and in most cases, there is no clear cause explaining their onset. They may have a subtle onset and initially present with abnormalities that are difficult to immediately attribute to a specific pathology. However, even simple tests, such as a urine test, can provide useful clues for further investigation. Intercepting these signs early and promoting access to specialized treatment centers can help shorten the diagnosis process and initiate appropriate management of the disease. Rapid action is important to reduce the risk of progression and complications, which has a tangible impact on people's lives,” the specialist emphasizes.
The importance of shortening the diagnostic process is also confirmed by data from the Rare Kidney Diseases (RKD) Barometer, promoted by Sobi and developed under the independent guidance of an Expert Advisory Group composed of physicians, researchers, and representatives of patient associations. The Barometer, which collected the experiences of people with rare kidney diseases and their caregivers in several European countries in 2025 and included 55 Italian respondents, highlights the complexity of the diagnostic and care pathway. The Barometer, according to the press release, indicates that 44% of Italian patients who responded reported a diagnostic delay of more than one year from the onset of the first symptoms, due to long waiting times, limited knowledge of the disease among healthcare professionals, and the high number of appointments required to reach a correct diagnosis. This leads to significant consequences, such as requiring dialysis or disease recurrence after the first transplant. But other aspects emerge that impact the lives of patients and caregivers, such as the socioeconomic impact on work and school, directly affecting those who care for the patient. Furthermore, the impact on psychological well-being is significant: 80% of caregivers believe that caregiving has significantly affected their emotional state, with 40% having already sought psychological support. From an economic perspective, too, 1 in 3 caregivers reports a loss of income, and 42% have to cover direct expenses. The care needs of people living with a rare kidney disease are also clearly evident.
The data therefore highlight how the treatment pathway extends well beyond the patient and directly involves the family, requiring significant investment in time, organization, and constant presence, and with potential repercussions on the psychological well-being and daily lives of caregivers. "In children and adolescents, chronic kidney disease, especially rare forms, can have a significant impact not only on physical but also psychological development, requiring continuous monitoring and a highly personalized therapeutic approach," says Marina Vivarelli, Head of the Nephrology Laboratory Research Unit at Bambino Gesù Children's Hospital in Rome. "Pediatric patients," she reports, "often face additional challenges related to inclusion in school and social life, and the psychological impact of the disease. The process can also be challenging for the family, as managing the disease requires presence, organization, and significant involvement from the caregivers of the child or adolescent. It is therefore important that pediatric patient care is not limited to managing clinical aspects, but also takes into account their developmental, relational, and psychological needs. For this reason, it is essential that the patient and family can count on a treatment plan that focuses not only on the disease, but on the person as a whole, with adequate support throughout all stages of development."
"For people living with rare kidney diseases like C3G," says Fabrizio Spoleti, president of Progetto Ddd Ets, "the diagnosis and management process is often long and complex, with a profound impact on patients' health and daily lives. Frequent checkups and the need to visit specialized referral centers place a significant organizational, financial, and emotional burden. The disease often begins in childhood, and can be very disabling, in some cases requiring dialysis. The impact is therefore extremely severe on the daily lives of children and their caregivers, including psychological and social issues. In this context, awareness initiatives like CL3AR are of great help: they contribute to raising awareness of these ultra-rare diseases in adults and children, which are still little understood, and give voice to a community that demands a listening ear, support, and concrete answers."
Sobi – as stated in the statement – is committed to concretely improving the lives of people with rare kidney diseases, acting urgently and responsibly to reduce the burden these diseases place on individuals, their families, and the healthcare system.
"CL3AR concludes with an important legacy: increased awareness of a still little-known reality, new opportunities for dialogue, and greater attention to the concrete needs of people facing a diagnosis or living with these diseases. We are proud of the journey we have undertaken together with healthcare professionals, the patient community, and all those who contributed to this initiative, demonstrating how sharing knowledge and discussion can generate value for the entire community," says Carina Fiocchi, Medical Director of Sobi Italy, Greece, Malta, and Cyprus. "The conclusion of CL3AR represents an important milestone, but its true success lies in its ability to continue to generate knowledge, understanding, and concrete commitment over time, contributing to improving the treatment process and quality of life for those living with a rare kidney disease today."
The CL3AR project, the statement concludes, reflects Sobi's long-standing commitment to patient and caregiver communities through Unite4Rare. Co-created by international patient community leaders and Sobi leadership, Unite4Rare outlines the responsibilities undertaken, what has been accomplished so far, and how progress is measured over time. It builds on Sobi's expertise in rare diseases and patient engagement and demonstrates the company's commitment to generating real, positive impact, clarifying what patients and caregivers can concretely expect from Sobi.
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