A glomerular disease characterized by severe renal failure and nephrotic syndrome at birth, which rapidly improve in the first weeks of life.
Comprehensive, easy-to-understand information about this condition
How we create this content →Patient Advocacy Groups (PAGs) provide support, resources, and community for patients and caregivers.
Consider asking your healthcare providers these condition-specific questions
European rare disease database
Genetic and Rare Diseases Info Center
Patient Advocacy Groups (PAGs) provide support, resources, and community for patients and caregivers.
Consider asking your healthcare providers these condition-specific questions
European rare disease database
Genetic and Rare Diseases Info Center
The limited documentation surrounding congenital membranous nephropathy is largely due to its extreme rarity, with a prevalence of less than 1 in 1,000,000. This rarity restricts the number of systematic clinical studies and comprehensive data collection. Additionally, the condition's complex nature, which involves maternal immune responses, complicates characterization and understanding.
To navigate congenital membranous nephropathy, consider consulting a pediatric nephrologist with expertise in alloimmune renal diseases. Engaging with patient organizations such as the Maternal Alloimmunization Foundation (https://alloimmunization.org) and The Allo Hope Foundation (https://allohopefoundation.org) can provide valuable resources and support. Additionally, inquire about any opportunities for participation in patient registries or natural history studies that may be available.
Currently, there are several orphan drugs designated for the treatment of congenital membranous nephropathy, including Budoprutug, Corticotropin (ACTH) porcine (synthetic), felzartamab, Mizoribine, obinutuzumab, rituximab, and zanubrutinib. However, there are no active clinical trials available at this time. For more information on ongoing research, you can search for related studies at ClinicalTrials.gov.
Actionable guidance for navigating care for congenital membranous nephropathy due to maternal anti-neutral endopeptidase alloimmunization
To navigate congenital membranous nephropathy, consider consulting a pediatric nephrologist with expertise in alloimmune renal diseases. Engaging with patient organizations such as the Maternal Alloimmunization Foundation (https://alloimmunization.org) and The Allo Hope Foundation (https://allohopefoundation.org) can provide valuable resources and support. Additionally, inquire about any opportunities for participation in patient registries or natural history studies that may be available.
Consider asking your healthcare providers these condition-specific questions
Connect with organizations supporting the congenital membranous nephropathy due to maternal anti-neutral endopeptidase alloimmunization community
Helpful links for rare disease information and support
Clinical profile data for this condition is not yet available. Phenotype information may still be loading below.
Patient Advocacy Groups (PAGs) provide support, resources, and community for patients and caregivers.
Consider asking your healthcare providers these condition-specific questions
European rare disease database
Genetic and Rare Diseases Info Center
AI-Generated Content: This summary was generated using AI. Content has been fact-checked. Always consult with qualified healthcare providers for medical guidance.
Kisho delivers this disease record via API, including phenotypes (HPO), genes, orphan drug designations, screening status, and PAG mapping, with version history and governance.