A latest collaboration between the Spanish National Federation of Associations for the Fight Against Kidney Disease (ALCER), the Spanish Federation of Rare Diseases (FEDER), and Novartis aims to improve the diagnosis and treatment of chronic glomerular diseases, including IgA Nephropathy and C3 Glomerulopathy, which are considered rare or ultra-rare conditions. The initiative seeks to enhance access to accurate information and accelerate early diagnosis, ultimately addressing unmet needs within these patient communities.
The partnership builds upon the work of the 2025 Atlas of Chronic Glomerulonephritis, developed by ALCER in collaboration with Novartis and endorsed by the Spanish Society of Nephrology. This report is the first to incorporate the perspectives of patients and caregivers, offering a comprehensive analysis of the current state of these diseases in Spain and proposing recommendations for a more integrated and coordinated care model.
Chronic glomerulonephritis encompasses a group of diseases affecting the glomeruli, the kidney’s functional units responsible for filtering waste and fluids from the blood. While relatively uncommon, these conditions are a leading cause of chronic kidney disease, surpassed only by diabetes and hypertension. These diseases can progress to end-stage renal disease within 10 to 15 years, significantly impacting patients’ quality of life. Early detection and intervention are crucial for managing these conditions and slowing their progression.
C3 Glomerulopathy is among the most severe forms of the disease, carrying a particularly unfavorable prognosis. Ten-year renal survival rates following diagnosis range from 40% to 60%, and the risk of recurrence is high even after kidney transplantation.
The Atlas of Chronic Glomerulonephritis also reveals the significant emotional toll these diseases take on patients. Seven out of ten individuals affected report experiencing psychoemotional consequences related to their illness, a figure that increases as the disease progresses and requires treatments like dialysis or transplantation. The study also highlighted substantial diagnostic delays, with nearly 58% of patients believing their condition was detected late, and more than three healthcare professionals were consulted before a correct diagnosis was reached. These delays can accelerate kidney function deterioration and increase the risk of progressing to advanced stages of chronic kidney disease.
Unique Challenges
Daniel Gallego, President of ALCER, explained that glomerular diseases share many of the difficulties associated with kidney disease but also face additional challenges, such as low prevalence, diagnostic delays, and a lack of specific information. He stated that collaborating with FEDER allows for a broader perspective, identification of unmet needs, and the development of solutions that facilitate early diagnosis and access to specialized, coordinated care.
Juan Carrión, President of FEDER, emphasized that these conditions share many of the challenges affecting all rare diseases, including delayed diagnosis, territorial inequities in access to care, limited treatment options, restricted research, and a high psychosocial burden. He noted that the Atlas of Chronic Glomerulonephritis represents the most extensive study in Europe involving individuals living with rare glomerular diseases, providing real-world data on how the illness impacts their daily lives and those of their families.
According to nephrologist Fernando Caravaca-Fontán of the 12 de Octubre University Hospital, the study provides a comprehensive overview of the current situation and identifies key areas for improvement. He explained that in rare conditions like C3 Glomerulopathy, the clinical impact is particularly relevant because it often affects young patients and carries an unfavorable renal prognosis if not addressed promptly. He added that the high risk of progression to advanced kidney disease and recurrence even after transplantation underscores the importance of collaborative initiatives to facilitate early patient identification, improve access to targeted therapies, and promote networks of reference centers.
Boosting Early Diagnosis
The strategic priorities of the alliance will focus on improving access to specialized care for chronic glomerulonephritis and other rare kidney diseases. Planned actions include the creation of a map of specialized centers, the development of tools to support early symptom identification, and strengthening coordination with primary care physicians to expedite referrals to specialists and reduce time to diagnosis.
The initiative also includes the development of informational materials for patients and families, providing clear, evidence-based content to enhance understanding of these conditions. These resources, which will be available on the ALCER website, will also include practical tools to improve communication between healthcare professionals and patients and encourage shared decision-making.
Esther Espinosa, Head of Communications and Patient Relations at Novartis, underscored the company’s commitment to improving care for diseases that significantly impact people’s lives. She highlighted the importance of collaborating with patient organizations and healthcare professionals to drive initiatives that raise awareness of difficult-to-identify symptoms and promote early diagnosis, with the goal of creating a future where living with a kidney disease does not imply sacrificing quality of life.
