Rare Kidney Diseases Toolkit

Rare Kidney DiseaseS Toolkit

Serving as a curated resource, this toolkit aims to raise the profile of rare kidney diseases (RKDs), offer disease-specific tools, and understand and highlight the burden, gaps and unmet needs to fill.

Discover and access these tools and resources below.

Overview C3G Infographic       
In-Depth C3G Infographic

 C3G Basic PrimerEnglish  |  Japanese  |  Chinese

ISN Academy Curriculum on Fibromuscular Dysplasia
This curriculum will provide an up-to-date review on the pathophysiology, diagnosis and management of FMD.

Visual Abstract on the Diagnosis, Management and Treatment of IgA Nephropathy in 2023 and Beyond. View the abstract here.

ISN Global Kidney Care Podcast: Discussion on IgA Nephropathy: as part of the NephMadness PodCrawl

Animation on the Complement System and Related Kidney Diseases, with narration

Infographic on the Complement System and Related Kidney Diseases, with narration

Additional Resources on the Complement System

ISN Complement Pathway Disease Curriculum
This curriculum will provide a comprehensive review of the pathophysiology, diagnosis and management of various complement-mediated kidney diseases. The seven modules are:

  • Module 1: Basics of the Complement System
  • Module 2: Thrombotic Microangiopathies (TMA/aHUS)
  • Module 3: C3G
  • Module 4: Lupus
  • Module 5: ANCA Vasculitis
  • Module 6: Emerging Role and Understanding of Complement in IgAN: Potential for Therapeutics
  • Module 7: The Multifaceted Role of Complement in Kidney Transplant and Rejection: Lessons Learned and Future Direction

What do you know about Complement mediated Glomerulopathies? Take the quiz here.

In this podcast, Drs Namrata Parikh, Gary Chan and Nick Medjeral-Thomas discuss key clinical and pathology features of inappropriate, pathogenic complement activity that guide physicians to a diagnosis of C3 glomerulopathy. They discuss differences in investigation and management strategies between their respective clinical centers in Ottawa, Hong Kong and London, including access to clinical trials of therapeutic complement inhibitors. To finish, they speculated on the future impact on clinical nephrology of complement pathway analysis and inhibition.

ISN’s October ’22 eDigest presents recent publications in Kidney International Reports on the pathophysiology, progression, treatment, and validation of complement-mediated kidney diseases. It also highlights four original papers, in the field of complement-mediated kidney diseases, that have been published in Kidney International within the past few months. Explore the eDigest here.

Access WCN ’24 sessions on rare kidney diseases here.

  • Vladimír Tesař | Czech Republic
  • Sydney Tang | Hong Kong
  • Liz Lightstone | UK
  • Vivekanand Jha | India
  • Jonathan Barratt | UK
  • Ifeoma Ulasi | Nigeria
  • David Kavanagh | UK
  • Olivier Devuyst | Switzerland / Belgium
  • Gary Chan | Hong Kong
  • Namrata Parikh | USA
  • Nicholas Medjeral-Thomas | UK
Thank you to our reviewers and translators: Yoichiro Ikeda and Henry Wu.

This toolkit material is freely available for download by health care professionals and individual usage. For-profit organizations may link to toolkit materials with appropriate referencing but are not allowed to use the materials directly (including screenshots) in their own activities; and, where the toolkit materials are referenced with a link, society logos may not be used or displayed with the link. Non-profit organizations may link to the toolkit materials with appropriate referencing, and may promote the materials directly, but must seek permission for this first. If you have any questions concerning the rights to use these materials, please contact mmoorthy@theisn.org.

The Rare Kidney Diseases Toolkit is supported by Alexion AstraZeneca Rare Disease, Novartis and Roche.

Disclaimer text: This toolkit is intended to facilitate decision making of health professionals in their daily practice. However, final decisions concerning an individual patient must be made by the responsible health professional(s) in consultation with the patient and caregiver as appropriate. The ISN declines any responsibilities for any damage caused by the use that may be made of the information provided in this toolkit.