Celebrating aHUS Awareness Day by publishing the IPNA aHUS Guidelines!

We are delighted to share that the IPNA Clinical Practice Recommendations for atypical hemolytic uremic syndrome (aHUS) have just been published in Pediatric Nephrology.

This important milestone reflects an outstanding example of international collaboration and collective expertise. Following an extensive development process the recommendations are now ready to support the pediatric nephrology community.

We extend our sincere thanks to all authors, contributors and reviewers for their time, expertise and dedication to this work.

We are proud to contribute a resource that the community has been waiting for and hope that these recommendations will help advance the management and care of children with aHUS worldwide. We also invite you to join the upcoming IPNA Webinar on the aHUS Guidelines on November 26.

About the aHUS Guidelines

Given the rarity of aHUS and the resulting lack of randomized controlled trials, international treatment guidelines are currently not available, and treatment recommendations are typically based on expert opinion. In addition access to the prohibitively expensive complement targeting treatments for aHUS (e.g., eculizumab; ravulizumab) is limited to economically privileged countries, which creates an unacceptable and unjust global imbalance with respect to the management of aHUS patients, in particular children. 

On this background and given its focus on the management of rare kidney diseases, IPNA initiated the development of clinical practice recommendations (CPRs) for aHUS. The new aHUS CPRs were developed  based on a comprehensive literature review and – while formal GRADE scoring could not be applied due to limited high-quality evidence – reflect the Delphi wetted consensus of a large group of international aHUS experts.