Mar 11, 2026
3 min read
The Confederation of Nations to Fight Kidney Diseases (ALCER) and the Spanish Federation of Rare Diseases (FEDER), in collaboration with Novartis, have launched a partnership to improve access to chronic glomerular diseases such as IgA Nephropathy or C3 Glomerulopathy.
The National Federation of Societies Against Kidney Diseases (ALCER) and the Spanish Federation of Rare Diseases (FEDER), with the collaboration of Novartis, launched an alliance to improve the approach to chronic glomerular diseases, such as IgA Nephropathy or Glomerulopathy C3, these diseases are rare or very rare, respectively.The goal of this union is access to adequate information, early diagnosis and identification and addressing the unmet needs of these patient communities.
This initiative continues the work developed in the "Chronic Glomerulonephritis Atlas 2025", prepared by ALCER in collaboration with Novartis and approved by the Spanish Society of Nephrology (SEN).This is a document that includes, for the first time, the perspective of patients and caregivers, describing the current state of the disease and proposing recommendations to promote changes in the paradigm that improve a comprehensive and coordinated approach to chronic glomerulonephritis (CNG).
GNC is a set of pathologies that affect the structure and function of the glomerulus (functional unit of the kidney), which is responsible for filtering waste and fluids from the blood.This glomerulonephritis can develop into end-stage chronic kidney disease (CKD) within 10 to 15 years, making them complex conditions with a significant impact on patients' lives.Although they are little known, they constitute one of the main causes of CKD in Spain, behind only diabetes mellitus and hypertension.Among the most severe forms is C3 Glomerulopathy (GC3), which has one of the most unfavorable prognoses, with a 10-year survival from diagnosis of 40-60% and a high risk of relapse after transplantation (60-89%).
In this context, one of the main conclusions of the "Atlas CNG in Spain" is that 7 out of 10 patients suffer from psycho-emotional impact, and this value increases as the disease progresses to dialysis or transplantation.Moreover, the diagnostic delay was found to be high, with almost 58% of patients believing that they were diagnosed late, having consulted with more than three health professionals.This delay directly affects the progression of the disease, because a late diagnosis contributes to the progressive deterioration of kidney function and increases the risk of progression to CKD.
The importance of early diagnosis and coordinated care
Currently, glomerulonephritis is still a mystery, with symptoms that are sometimes not seen.This condition causes delays in diagnosis and treatment, which leads to the development of the disease and the need for kidney treatment (dialysis and / or transplantation), in addition to creating a heavy burden on the quality of life of patients.Daniel Gallego, president of ALCER, points out that "glomerular diseases share many common problems in kidney diseases, but they still face additional problems such as their rarity, slow diagnosis or lack of specific information.
For his part, FEDER President Juan Carrion reminds that "rare glomerular diseases have many of the same problems as rare diseases: in addition to the delay in diagnosis, there is also a lack of territorial equality, a lack of treatment, insufficient research and a large psychosocial impact. He also emphasizes the importance of the "CNG Atlas", referring to it as "the largest study carried out in Europe with people with glomerular diseasesrare, which provides real data on how the disease affects the lives of themselves and their family members."
For Dr. Fernando Caravaca-Fontán, nephrologist at the Hospital 12 de Octubre in Madrid, this study "gives a comprehensive picture of the current situation and highlights important areas for improvement of the system. In small forms such as C3 glomerulopathy, the clinical effect is particularly important because it usually affects young patients and in the case of the initial disease represents a negative phenomenon in the form of acute disease. Progress in the development of kidney disease and relapses even after transplantation. That's why Partnerships like can facilitate thisearly diagnosis of patients, access to therapies, improve networks and provide training tools for professionals and patients.”
More information and promotion of early diagnosis
The strategic axes of the association will focus on initiatives aimed at improving access to specialized care for chronic glomerulonephritis and rare kidney diseases.Among them, the preparation of a map of specialized centers, the preparation of guidance tools for the identification of symptoms and the strengthening of coordination with Primary Care, with the aim of speeding up referral to the appropriate specialist and reducing the time for diagnosis.In this way, the materials that will be developed for patients and families, with understandable and evidence-based information to better understand these pathologies, as well as practical resources based on doctor-patient communication and shared decision-making.All this material will be available on the ALCER website and aims to be a reference for professional guidance.
Esther Espinosa, head of communications and patient relations at Novartis, concluded that "At Novartis, we are committed to transforming care for diseases that impact people's daily lives. Therefore, we work with patients, health care professionals and associations to support initiatives like this, which aim to raise awareness of signs and symptoms that are difficult to recognize and promote quality of life."
