Rare Kidney DiseaseS Toolkit<\/h2>\n
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.<\/p>\n
Discover and access these tools\u00a0<\/span>and resources\u00a0<\/span>below.<\/p>\n <\/div> <\/div><\/div>[\/vc_column][\/vc_row][vc_row equal_height=”yes” content_placement=”bottom”][vc_column][vc_tta_accordion spacing=”5″ gap=”5″ c_position=”right” active_section=”” collapsible_all=”true” el_class=”accordion-isn”][vc_tta_section title=”New! Rare Kidney Disease Directory” tab_id=”Directory”][vc_column_text]This resource provides a list of rare kidney diseases, categorized and linked to their corresponding Orphanet codes (where possible). Access the directory here<\/a>.[\/vc_column_text][\/vc_tta_section][vc_tta_section title=”Disease Specific Resources” tab_id=”Disease-Specific”][vc_empty_space height=”15px”][vc_toggle title=”aHUS”]<\/p>\n [\/vc_toggle][vc_toggle title=”ADPKD”]<\/p>\n [\/vc_toggle][vc_toggle title=”C3G”]<\/p>\n ISN Webinar: Advancements in C3 Glomerulopathy \u00a0C3G Basic Primer *Please note the C3G resources will be updated after April 2026.[\/vc_toggle][vc_toggle title=”Fibromuscular Dysplasia”] This curriculum will provide an up-to-date review on the pathophysiology, diagnosis and management of FMD.[\/vc_toggle][vc_toggle title=”IgA Nephropathy”]<\/p>\n [\/vc_toggle][vc_toggle title=”Monoclonal Gammopathy of Renal Significance (MGRS) and Amyloidosis”]NEW! ISN Academy: MGRS and Amyloidosis Course<\/a><\/strong> [\/vc_toggle][vc_toggle title=”Lupus Nephritis”]<\/p>\n [\/vc_toggle][\/vc_tta_section][vc_tta_section title=”Resources on the Complement System” tab_id=”Complement-System”][vc_empty_space height=”20px”][vc_row_inner][vc_column_inner width=”1\/2″][vc_column_text]<\/p>\n [\/vc_column_text][vc_video link=”https:\/\/www.youtube.com\/watch?v=4789DQohXbU” el_width=”80″ align=”center”][\/vc_column_inner][vc_column_inner width=”1\/2″][vc_column_text]<\/p>\n [\/vc_column_text][vc_column_text] Download the infographic.<\/a><\/p>\n [\/vc_column_text][\/vc_column_inner][\/vc_row_inner][vc_empty_space][vc_text_separator title=”Additional Resources on the Complement System”][vc_empty_space height=”20px”][vc_toggle title=”ISN Complement Pathway Disease Curriculum”]ISN Complement Pathway Disease Curriculum<\/a> [\/vc_toggle][vc_toggle title=”ISN Quiz on Complement mediated Glomerulopathies”]<\/p>\n What do you know about Complement mediated Glomerulopathies? Take the quiz here<\/a>.<\/p>\n [\/vc_toggle][vc_toggle title=”ISN Global Kidney Care Podcast on CMKDs”] Tweetorial<\/p><\/div> <\/div>[\/vc_tta_section][vc_tta_section title=”Advocacy for Rare Kidney Diseases” tab_id=”Advocacy”][vc_row_inner][vc_column_inner width=”1\/3″][\/vc_column_inner][vc_column_inner width=”1\/3″][vc_column_text]<\/p>\n [\/vc_column_text][vc_single_image image=”47699″ img_size=”full” alignment=”center” onclick=”custom_link” img_link_target=”_blank” link=”https:\/\/www.theisn.org\/wp-content\/uploads\/2025\/05\/RKD-Fact-Sheet_English-1.pdf”][vc_column_text]<\/p>\n [\/vc_column_text][\/vc_column_inner][vc_column_inner width=”1\/3″][\/vc_column_inner][\/vc_row_inner][vc_row_inner][vc_column_inner] ASN Kidney Week 2022 Abstract<\/p><\/div> <\/div> Kidney International Reports, September 2024<\/p><\/div> <\/div> Kidney International Reports, December 2024<\/p><\/div> <\/div>[\/vc_column_inner][\/vc_row_inner][\/vc_tta_section][vc_tta_section title=”In-Person Events” tab_id=”Events”][vc_row_inner][vc_column_inner el_class=”box-blue-isn” width=”1\/5″ css=”.vc_custom_1715778170845{background-image: url(https:\/\/www.theisn.org\/wp-content\/uploads\/2021\/02\/educational-program.jpg?id=13323) !important;}”][vc_column_text]<\/p>\n [\/vc_column_text][\/vc_column_inner][vc_column_inner el_class=”box-blue-isn” width=”1\/5″ css=”.vc_custom_1715778290384{background-image: url(https:\/\/www.theisn.org\/wp-content\/uploads\/2021\/02\/educational-program.jpg?id=13323) !important;}”][vc_column_text]<\/p>\n [\/vc_column_text][\/vc_column_inner][vc_column_inner el_class=”box-blue-isn” width=”1\/5″ css=”.vc_custom_1715778333278{background-image: url(https:\/\/www.theisn.org\/wp-content\/uploads\/2021\/02\/educational-program.jpg?id=13323) !important;}”][vc_column_text]<\/p>\n [\/vc_column_text][\/vc_column_inner][vc_column_inner el_class=”box-blue-isn” width=”1\/5″ css=”.vc_custom_1721136642230{background-image: url(https:\/\/www.theisn.org\/wp-content\/uploads\/2021\/02\/educational-program.jpg?id=13323) !important;}”][vc_column_text]<\/p>\n [\/vc_column_text][\/vc_column_inner][vc_column_inner el_class=”box-blue-isn” width=”1\/5″ css=”.vc_custom_1747998082325{background-image: url(https:\/\/www.theisn.org\/wp-content\/uploads\/2021\/02\/educational-program.jpg?id=13323) !important;}”][vc_column_text]<\/p>\n [\/vc_column_text][\/vc_column_inner][\/vc_row_inner][vc_row_inner][vc_column_inner el_class=”box-blue-isn” width=”1\/5″ css=”.vc_custom_1715778170845{background-image: url(https:\/\/www.theisn.org\/wp-content\/uploads\/2021\/02\/educational-program.jpg?id=13323) !important;}”][vc_column_text]<\/p>\n [\/vc_column_text][\/vc_column_inner][vc_column_inner el_class=”box-blue-isn” width=”1\/5″ css=”.vc_custom_1747998471107{background-image: url(https:\/\/www.theisn.org\/wp-content\/uploads\/2021\/02\/educational-program.jpg?id=13323) !important;}”][vc_column_text]<\/p>\n [\/vc_column_text][\/vc_column_inner][vc_column_inner el_class=”box-blue-isn” width=”1\/5″ css=”.vc_custom_1747998541419{background-image: url(https:\/\/www.theisn.org\/wp-content\/uploads\/2021\/02\/educational-program.jpg?id=13323) !important;}”][vc_column_text]<\/p>\n [\/vc_column_text][\/vc_column_inner][vc_column_inner width=”1\/5″][\/vc_column_inner][vc_column_inner width=”1\/5″][\/vc_column_inner][\/vc_row_inner][\/vc_tta_section][vc_tta_section title=”ISN Fellowship Opportunity in Glomerular Diseases” tab_id=”Fellowship”][vc_column_text]New Specialized ISN Fellowship Opportunity in Glomerular Disease Training<\/strong><\/p>\n The ISN has joined forces with Otsuka Pharmaceutical to support specialized nephrology training in glomerular diseases. This partnership will provide aspiring kidney care professionals with hands-on experience and mentorship in this essential area of nephrology expertise.<\/p>\n If you\u2019re looking to advance your expertise in glomerular diseases, the <\/span>next ISN Fellowship application deadline is October<\/span><\/strong> 1<\/strong>.\u00a0Applications will open on July 1.<\/span><\/p>\n Find out more and apply here<\/strong><\/a>.<\/span>[\/vc_column_text][\/vc_tta_section][vc_tta_section title=”WCN resources on RKDs” tab_id=”Additional-Resources”][vc_column_text]<\/p>\n [\/vc_column_text][vc_column_text]<\/p>\n [\/vc_column_text][\/vc_tta_section][vc_tta_section title=”Acknowledgments” tab_id=”1647508653447-964b9d3c-1b2f”][vc_toggle title=”Steering Committee Members”]<\/p>\n [\/vc_toggle][vc_toggle title=”Tool Developers”]<\/p>\n [\/vc_toggle][vc_empty_space height=”16px”][vc_column_text]<\/p>\n [\/vc_column_text][\/vc_tta_section][vc_tta_section title=”Copyright and Permissions” tab_id=”1695203400468-4ba31337-3b42″][vc_column_text]This toolkit material is freely available for download by healthcare 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<\/a>.[\/vc_column_text][\/vc_tta_section][vc_tta_section title=”Support” tab_id=”Support”][vc_column_text]<\/p>\n [\/vc_column_text][vc_row_inner][vc_column_inner width=”1\/4″][\/vc_column_inner][vc_column_inner width=”1\/4″][vc_column_text]\n
![\"\"](\"https:\/\/www.theisn.org\/wp-content\/uploads\/2025\/07\/ADPKD-Infographic-Image-213x300.png\")
<\/a>This infographic provides an overview of ADPKD, including information on diagnosis, delaying kidney disease progression, complications, and additional considerations<\/div>\n![\"\"](\"https:\/\/www.theisn.org\/wp-content\/uploads\/2025\/10\/PKD-Quiz-scaled.jpg\")
<\/a> Test your knowledge on Polycystic Kidney Disease by taking this quiz<\/div>\n![\"\"](\"https:\/\/www.theisn.org\/wp-content\/uploads\/2025\/10\/Space-PKD-Day-scaled.jpg\")
<\/a> Twitter Space in recognition of World PKD Day.<\/div>\n![\"\"](\"https:\/\/www.theisn.org\/wp-content\/uploads\/2024\/10\/C3G-1-300x211.jpeg\")
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<\/a><\/div>\n
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\n<\/a><\/div>\n<\/div>\n
\n![\"\"](\"https:\/\/www.theisn.org\/wp-content\/uploads\/2024\/05\/RKD-Toolkit_C3G-Primer-233x300.png\")
\nEnglish<\/a> \u00a0|
\nJapanese<\/a> \u00a0|
\nChinese<\/a><\/p>\n<\/div>\n<\/div>\n<\/div>\n![\"\"](\"https:\/\/www.theisn.org\/wp-content\/uploads\/2025\/02\/2024-01-Rare-Disease-Fibromuscular-dysplasia-curriculum-CME-300x250-banner-for-KI.jpg\")
<\/a><\/p>\n![\"\"](\"https:\/\/www.theisn.org\/wp-content\/uploads\/2024\/10\/IgAN-300x205.jpeg\")
<\/a>
\nISNeducation Nuances in Nephrology Webinar: Advancements and
\nInnovations in IgA Nephropathy: Diagnosis, Treatment, and
\nManagement<\/a><\/p>\n<\/div>\n![\"\"](\"https:\/\/www.theisn.org\/wp-content\/uploads\/2024\/10\/isn-gkc-podcast-300x300.jpg\")
<\/a>
\nISN Global Kidney Care Podcast: Changing Treatment Landscape in IgAN
\nand Disease Modification Approaches<\/a><\/div>\n<\/a>
\nISN Global Kidney Care Podcast: Discussion on IgA Nephropathy: as part
\nof the NephMadness PodCrawl<\/a><\/div>\n<\/div>\n![\"\"](\"https:\/\/www.theisn.org\/wp-content\/uploads\/2023\/08\/IgAN-Visual-Abstract-300x169.jpg\")
<\/a>
\nVisual Abstract on the Diagnosis, Management and Treatment of IgA
\nNephropathy in 2023 and Beyond. View the abstract
\nhere<\/a>.<\/p>\n<\/div>\n![\"\"](\"https:\/\/www.theisn.org\/wp-content\/uploads\/2025\/10\/Academy.jpg\")
IgA Nephropathy Curriculum<\/a><\/div>\n<\/div>\n<\/div>\n
\n![\"\"](\"https:\/\/www.theisn.org\/wp-content\/uploads\/2025\/03\/2025-03-Rare-Disease-MGRS-and-Amyloidosis-curriculum-visual-300x238.png\")
\nCourse participants will learn how to:<\/p>\n\n
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Animation on the Complement System and Related Kidney Diseases, with narration<\/h4>\n
Infographic on the Complement System and Related Kidney Diseases, with narration<\/h4>\n
![\"\"](\"https:\/\/www.theisn.org\/wp-content\/uploads\/2022\/07\/Intro-to-Complement-System-Infographic-300x168.png\")
<\/a><\/p>\n
\nThis curriculum will provide a comprehensive review of the pathophysiology, diagnosis and management of various complement-mediated kidney diseases. The seven modules are:<\/p>\n\n
![\"\"](\"https:\/\/www.theisn.org\/wp-content\/uploads\/2022\/11\/September-300x187.jpg\")
<\/a>[\/vc_toggle][vc_toggle title=”ISN-KDIGO Webinar Series on Complement in CKD”]All of the recorded versions of the pre-webinar series leading up to KDIGO\u2019s Controversies Conference on the Role of Complement in Kidney Disease can be found below.<\/p>\n\n
![\"\"](\"https:\/\/www.theisn.org\/wp-content\/uploads\/2024\/05\/img-podcast-300x202.jpg\")
In this podcast<\/a><\/strong>, 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.[\/vc_toggle][vc_toggle title=”ISN October 2022 eDigest on CMKDs”]ISN\u2019s October \u201922 eDigest\u00a0presents recent publications in Kidney International Reports\u00a0on the pathophysiology, progression, treatment, and validation of complement-mediated kidney diseases. It also\u00a0highlights 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.<\/a><\/strong>[\/vc_toggle][vc_toggle title=”ISN Frontiers Webinars”]![\"\"](\"https:\/\/www.theisn.org\/wp-content\/uploads\/2022\/03\/CMKD-Toolkit_ISN-Frontiers-1-300x169.png\")
\u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0<\/a>![\"\"](\"https:\/\/www.theisn.org\/wp-content\/uploads\/2022\/03\/Frontiers-Webinar-2-300x168.png\")
<\/a>[\/vc_toggle][\/vc_tta_section][vc_tta_section title=”general resources” tab_id=”Articles”]Rare Kidney Diseases: Unmasking the Zebras in Nephrology!<\/h4><\/a>
Rare Kidney Disease Fact Sheet<\/h4>\n
English<\/a>\u00a0|\u00a0 Arabic<\/a>\u00a0|\u00a0 Chinese<\/a> |\u00a0 French<\/a> |\u00a0 Japanese<\/a>\u00a0| \u00a0Spanish<\/a><\/h5>\n
Identification of Neglected Kidney Diseases: Results From an International Survey<\/h4><\/a>
Scoping Review of Economic Analyses of Rare Kidney Diseases<\/h4><\/a>
Systematic Scoping Review of Socioeconomic Burden and Associated Psychosocial Impact in Patients With Rare Kidney Diseases and Their Caregivers<\/h4><\/a>
GN Primer Course – Tokyo 2023<\/a><\/h4>\n
Expert Forum on aHUS – 2023<\/a><\/h4>\n
GN Pre-Congress Course – WCN ’24<\/a><\/h4>\n
GN Primer Course – China 2024<\/a><\/h4>\n
Expert Forum on Complement Therapeutics in C3G & IgAN – 2025<\/a><\/h4>\n
GN Primer Course – Kenya 2025<\/a><\/h4>\n
GN Primer Course – Prague 2025<\/a><\/h4>\n
GN Primer Course – Taipei 2025<\/a><\/h4>\n
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\u00a0 \u00a0 \u00a0 \u00a0Access WCN ’25 sessions on rare kidney diseases here<\/a>.<\/h4>\n![\"\"](\"https:\/\/www.theisn.org\/wp-content\/uploads\/2024\/01\/2024-01-WCN24-regular-fee-website-homepage-banner-WCN-logo-300x103.png\"){kind=logo}
\u00a0 \u00a0 \u00a0 \u00a0Access WCN ’24 sessions on rare kidney diseases here<\/a>.<\/h4>\n\n
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Thank you to our reviewers and translators: Dina Abdellatif, Fernanda Arce, Henry Wu, Lili Zhou, Sonia Guillouet,\u00a0 Yoichiro Ikeda and the Scientific Committee of the Japanese Society of Nephrology.<\/h5>\n
The Rare Kidney Diseases Toolkit is supported by<\/h4>\n
![\"\"](\"https:\/\/www.theisn.org\/wp-content\/uploads\/2024\/12\/Roche_Logo.svg-300x163.png\"){kind=logo}
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