Alliance to improve the diagnosis of kidney diseases

The National Federation of Associations for the Fight Against Kidney Diseases (Alcer) and the Spanish Federation of Rare Diseases (Feder) have promoted, together with Novartisan alliance to improve the diagnosis and access to information about rare kidney diseases, especially chronic glomerulonephritis (CNG). The initiative seeks to improve the approach to these pathologies by identifying unmet needs and developing solutions that facilitate early diagnosis and access to specialized care.

The project continues the Atlas of Chronic Glomerulonephritis (CNG) 2025a document prepared by Alcer in collaboration with Novartis and endorsed by the Spanish Society of Nephrology (SEN)which includes, for the first time, the perspective of the patient and the caregiver to reflect the current situation of these diseases.

GNC are a set of pathologies that affect the glomerulus, the functional unit of the kidney responsible for filtering waste and fluids from the blood, and that can progress to end-stage chronic kidney disease (CKD) in 10-15 years. Although they are little known, they constitute one of the main causes of CKD in Spain, only behind diabetes mellitus and high blood pressure. Among the most severe forms is C3 Glomerulopathy (GC3), as it presents one of the most unfavorable prognoses, with a 10-year renal survival from diagnosis of 40-60%6 and a high risk of post-transplant recurrence (60-89%).

Through the alliance, the three entities will promote initiatives aimed at improve adequate access to specialized care, such as the preparation of a map of centers, the development of tools to support the identification of symptoms and the reinforcement of coordination with primary care. Likewise, it will focus on the generation of materials aimed at patients and families, which will subsequently be accessible within the ALCER website and which aspire to consolidate themselves as a reference point for specialized guidance.

Daniel Gallego, president of Alcer, points out that “glomerular diseases present many of the difficulties inherent to kidney disease, but they also face additional challenges such as their low prevalence, diagnostic delay or lack of specific information. Working together with Feder allows us to broaden our vision, identify unmet needs and build solutions that improve access to early diagnosis and specialized and coordinated care.”

For its part, Juan Carrionpresident of the Spanish Federation of Rare Diseases (Feder), agrees that “rare glomerular diseases share many of the difficulties of all rare diseases: in addition to the delay in diagnosis, also the lack of territorial equity, the scarcity of treatments, insufficient research and high psychosocial impact.”

The doctor Fernando Caravaca-Fontán, clinical nephrologist at Hospital 12 de Octubre in Madrid, explains that “in less frequent forms such as C3 glomerulopathy, the clinical impact is especially relevant because it usually affects young patients and presents an unfavorable renal prognosis if early intervention is not performed.”

Esther Espinosa, Head of Communications and Patient Relations at Novartis Spain, states that “we work together with patients, health professionals and associations to support initiatives like this one that aim to increase awareness of signs and symptoms that are difficult to identify or promote early diagnosis. We want to contribute to a future in which living with kidney disease does not mean giving up quality of life.”