Madrid – A new alliance between the National Federation of Associations for the Fight Against Kidney Diseases (ALCER), the Spanish Federation of Rare Diseases (FEDER), and Novartis aims to improve the diagnosis and treatment of rare and chronic glomerular diseases, impacting thousands in Spain. These conditions, including IgA Nephropathy and C3 Glomerulopathy, often go undiagnosed for extended periods, leading to delayed care and poorer patient outcomes.
The collaboration builds upon the 2025 Atlas of Chronic Glomerulonephritis, a landmark study developed by ALCER with Novartis and endorsed by the Spanish Society of Nephrology (SEN). This atlas, for the first time, captured the perspectives of patients and caregivers, revealing the significant emotional toll and diagnostic delays associated with these rare kidney diseases. The initiative seeks to address these critical gaps in care and improve the lives of those affected.
Glomerulonephritis encompasses a group of diseases affecting the glomeruli, the kidney’s filtering units. Whereas relatively uncommon, these conditions are a leading cause of chronic kidney disease (CKD), second only to diabetes and hypertension, according to research highlighted by the alliance. Without timely intervention, these diseases can progress to end-stage renal disease within 10 to 15 years, significantly impacting quality of life.
One of the most severe forms, C3 Glomerulopathy, carries a particularly unfavorable prognosis. Data indicates that only 40-60% of patients survive for ten years after diagnosis, with a high risk of recurrence even after kidney transplantation. This underscores the urgent demand for earlier detection and more effective treatments.
The Atlas of Chronic Glomerulonephritis revealed a substantial emotional burden on patients, with seven out of ten reporting psychoemotional consequences related to their illness. This burden intensifies as the disease progresses and patients require treatments like dialysis or transplantation. Perhaps more concerning, the study found that approximately 58% of patients experienced a significant delay in diagnosis, often consulting with more than three healthcare professionals before receiving an accurate assessment. This delay accelerates kidney deterioration and increases the risk of advanced CKD.
Addressing Unique Challenges
Daniel Gallego, President of ALCER, emphasized that glomerular diseases share many of the difficulties inherent in kidney disease, but also present unique challenges due to their low prevalence, diagnostic delays, and lack of specific information. He stated that collaboration with FEDER will broaden perspectives, identify unmet needs, and develop solutions for earlier diagnosis and specialized care.
Juan Carrión, President of FEDER, echoed this sentiment, noting that these diseases share common challenges with other rare conditions, including diagnostic delays, territorial inequities in access to care, limited treatment options, insufficient research, and a high psychosocial burden. He highlighted that the Atlas of GNC represents the most comprehensive study in Europe focusing on individuals living with rare glomerular diseases, providing valuable real-world data on the impact of these conditions on daily life.
Nephrologist Fernando Caravaca-Fontán, from the 12 de Octubre University Hospital, described the study as providing a comprehensive overview of the current situation and identifying key areas for improvement. He noted that in rare conditions like C3 Glomerulopathy, early intervention is crucial, particularly as it often affects younger patients and carries a poor renal prognosis without prompt treatment. He added that the high risk of progression to advanced kidney disease and recurrence after transplantation makes initiatives like this alliance vital for early identification, access to targeted therapies, and the development of referral centers.
Focus on Early Diagnosis and Specialized Care
The alliance’s strategic priorities center on improving access to specialized care for chronic glomerulonephritis and other rare kidney diseases. Planned initiatives include creating a map of specialized centers, developing tools for early symptom identification, and strengthening coordination with primary care physicians to expedite referrals and reduce diagnostic timelines.
The initiative also aims to create informative materials for patients and families, providing clear, evidence-based content to enhance understanding of these conditions. These resources, available on the ALCER website, will include practical tools to improve communication between healthcare professionals and patients, fostering shared decision-making.
Esther Espinosa, Communications and Patient Relations Manager at Novartis, underscored the company’s commitment to improving care for diseases that significantly impact people’s lives. She emphasized the importance of collaborating with patient associations and healthcare professionals to raise awareness of difficult-to-identify symptoms and promote early diagnosis, ultimately striving for a future where living with kidney disease does not mean sacrificing quality of life.
This collaborative effort represents a significant step towards addressing the challenges faced by individuals living with rare glomerular diseases in Spain, with a focus on improving diagnostic pathways and ensuring access to appropriate care. The development of the specialist center map and symptom identification tools will be key next steps in realizing the alliance’s goals.
Disclaimer: This article provides informational content and should not be considered medical advice. Please consult with a qualified healthcare professional for any health concerns or before making any decisions related to your health or treatment.
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