General Info

Know aHUS:  Know US


Info Centre 


Clinical Information

Genetic Atypical Hemolytic-Uremic Syndrome – GeneReviews®

KDIGO Conclusions from a “Kidney Disease: Improving Global Outcomes” for aHUS and C3 Glomerulopathy  

KDIGO: aHUS & C3G Physician Reference Guide

aHUS Clinical Tracker

Atypical HUS Clinical Channel (YouTube)


Networks and Support

Nations: aHUS Advocacy & Patient Groups

aHUS Clinicians & Investigators

aHUS & TMA Study Centers


aHUS & COVID-19:  Articles, Information, Resources

aHUS Alliance: Articles

Reflections on aHUS during a Global Pandemic (7 May 2020) A holistic view of patient advocacy

aHUS and COVID-19  (18 Mar 2020)  Conversations and Insights

They “Get It’ When they can Get It  (14 Mar 2020)  Parallels among COVID-19 & Rare Diseases

aHUS Trials Watch 10  (8 March 2020)  Toronto Complement Conference, NCT04288713, and COVID-19

aHUS Alliance:  Topic-Specific Articles

Thrombotic Microangiopathy & Precision Medicine  What’s to be learned from the Pandemic?

COVID-19: Challenges faced by Dialysis Patients  Patient Concernss & Issues for Dialysis Centers

Mental Health & COVID-19  Mental Heath:  Issues & Resources

aHUS Alliance:  Resources

Webinar:  aHUS & COVID-19  (24 Apr 2020)   Global Registry SAB presents aHUS Patient FAQs

Webinar Transcript (24 Apr 2020)  Written Transcript of the above)

aHUS & COVID-19: A Resource Page   Information, Research, News of interest to the aHUS community

Articles on New Info regarding COVID-19 appeared: 

17 April 2020, COVID-19 Update

30 April 2020  Atypical HUS & COVID-19 



Patient Experiences & Engagement

A Reluctant Advocate (Book)

Patients as Partners

Patient Engagement: Reality or Buzzwords?

aHUS Patient Centricity

aHUS Global Patient Voices

aHUS in China

aHUS in Poland

aHUS in Japan

Samko & family: Tale from Slovakia

TMA Boston 

Myths of Patient Engagement

Collaborative Partnership in Research: Global aHUS Registry

aHUS Global Patients’ Research Agenda



Focus on Children & Young Adults

aHUS & School

aHUS for Youth Leaders, Camps & Sports

Teen transitioning to Adult Nephrology Care

Parent Questions about Childhood aHUS Issues

international consensus, Management of aHUS in Children


Issue specific Topics

Dialysis Diaries:  aHUS & Dialysis, Diets & Fluids, Heart Problems, Long Term Complications

Skin: aHUS & TMA

Brain Fog & Kidney Disease

aHUS Care:  The Case for Multidisciplinary Collaboration

aHUS & Pregnancy

Infusions while Traveling Away from Home

Transplant Research & aHUS

Cardiorenal Syndrome: Heart & Kidney Relationship

Vision Issues & aHUS

EDU: Teaching & Learning at Work and School

aHUS Rare Caregivers

aHUS Research & Publications 

COVID-19 (see listing above)



Finding aHUS Research

How to become a rare disease Advocate for aHUS

aHUS Advocate at the United Nations, K Shah

Reluctant Advocate, series: Changing UK Health Policy

aHUS at the Cleveland Clinic Rare Genetic Disease Symposium

Whistlestop Tour- Patient Advocates at 4 Expert Centres

R.O.W. : aHUS in the Rest of the World

aHUS Conference: the Dutch Approach

Perspectives in aHUS

aHUS Awareness Day & Rare Disease Day



CUREiHUS &Radboud, NL:  Drs N van de Kar, J Wetzels, C Duineveld & K Wijnsma

Prof Fadi Fakhouri: aHUS & Pregnancy

Dr Gianluigi Ardissino: Centro SEU

Drs M McCullogh & E Gottlich: Proposal for aHUS Drug Access

Dr Adrian Lungu: aHUS in Romania

Dr Ralf Reski: Moss-FH & biopharmaceuticals

Prof Stephen Perkins: Complement Database

Dr I-Ru Chen:  Taiwan, China Times article for aHUS Day

Sarah Staffiere:  Finding a New Normal after aHUS Diagnosis

Cameron James:  Family Rhythms & aHUS

Kamal D. Shah: Patient & co-Founder NephroPlus Dialysis Centres


Patient materials & Resources

Atypical HUS 1.0

aHUS Fact Sheets (Ex: 2019 Versions)

aHUS Symptoms can be Perplexing

aHUS Clinical Tracker

Finding aHUS Research

aHUS Expert Centres, Attributes

ES: SHUa-Síndrome Hemolítico Urémico Atípico

FR: Syndrome Hémolytique et Urémique Atypique


Clinical trials & Drug R/D  Atypical HUS (trials)  Thrombotic Microangiopathies (trials)

Breaking Barriers in aHUS Clinical Trials

Clinical Trial Watch, articles

aHUS Trials Watch 10  (8 March 2020)  Toronto Complement Conference, NCT04288713, and COVID-19

Akari Therapeutics  CoversinNCT03829449

Alexion   Eculizumab & Ravulizumab, formerly ALXN1210 (Spotlight 5, Series)

Clinical Trial, Stopping Eculizumab: STOPECU (NCT02574403) 

Alnylam   Cemdisiran    Switching from Eculizumab to Cemdisiran, NCT03999840

Omeros     Narsoplimab     UK Collaboration

Generium   Eliziara, 1st biosimilar to Eculizumab

Samsung Bioepis Co. Ltd   SB12- potential biosimilar to eculizumab

aHUS Drug R & D Therapeutics

Small Molecule Factor D Inhibitors


Drug access

Global Drug Access Panel Proposal, South Africa

2016 aHUS Global Poll data: White paper – Access to Treatment

2018 aHUS Therapeutic Drugs, Market Factors

Challenges of Eculizumab:  Patients’ Perspective (section, Raina et al. 2019)

aHUS Drug Access in Low Resource Nations, Dr A Bagga (Cleveland Clinic, Sept 2019)




National aHUS Patient Advocacy: Network

Your Nation not Listed?  Learn about the R.O.W. (Rest of the World)

Connect with the aHUS Alliance Global Action Team



Contact us