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About aHUS | Special Events | Clinical Information | Networks and Support | Patient Materials (to Print & Share) |aHUS Global Advocate:  NEWSLETTER |aHUS alliance Global Action | aHUS & COVID-19 | Patient Experiences & Engagement | National & Global |Children & Young Adults | Advocacy | Interviews | Patient Materials & Resources | Clinical trials & Drug R/D

Topic Specific Issues : TMA & aHUS , aHUS Diagnosis, aHUS Classification, Transplants & Dialysis
Drug Access & Treatment: Stopping Eculizumab, Ravulizumab


About aHUS – General Info

Info Centre 

Know aHUS:  Know US

aHUS PRESS KIT

Image Gallery:  Atypical HUS info & advocacy

Atypical HUS 1.0 – to ‘QuickStart’ your search for Info & Resources

aHUS Community Advisory Board (CAB)

2022 Atypical HUS Therapeutic Drugsa Landscape Overview  https://bit.ly/aHUS2022drugReview

Atypical HUS Research & Publications   A ‘virtual library’ of 1,000+ aHUS-specific research, organized by topic such as: Diagnosis, Treatments, Critical Care, Pregnancy, Multi-Organ Involvement, Discontinuing Treatment/Relapse and More

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Special Events – held Annually

aHUS Awareness Day (24 Sept) & Rare Disease DayInfo & Resources.  Links to our current Campaigns

See our Campaigns on Twitter: @aHUS24Sept & @aHUSallianceAct

2023 SEPT 2024 – FACT SHEET (released for 24 Sept: aHUS Awareness Day)

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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)

aHUS Research & Publications: a Clinical ‘Library’

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Networks and Support

Nations: aHUS Advocacy & Patient Groups (for Articles on specific nations, see below: Patient Engagement & Experience)  

aHUS Clinicians & Investigators

aHUS & TMA Study Centers

Global aHUS Community Advisory Board (CAB)  Visit Our aHUS CAB Landing Page  https://bit.ly/GlobalCABaHUS

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Patient Materials – to Print, Use, Share  

Fact Sheet2023-Sept-2024 edition, pdf to print at URL: https://bit.ly/aHUS2023facts 

QR Code Sheet:  pdf to print SEPT 2023 Edition, quick access to select  assets URL: https://bit.ly/QRcodesSept2023aHUS

Lab & Clinical Tracker (and inserts): tool to monitor lab trends & concerns

Know aHUS – Know Us: pdf on living with aHUS 

In English   en Español (more HERE) en Français (more HERE)

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aHUS Global Advocate:  NEWSLETTER

aHUS NEWSLETTER (Intro & Subscription Info):  aHUS Alliance Launches its Newsletter

aHUS Global Advocate Newsletters:  Archived Volumes

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aHUS alliance Global Action – our own Research

2021 aHUS Global Survey:  BACKGROUND Article

  • 1st Report  (issued 24 Sept 2021) Article w/ Background   REPORT 1 (pdf) Patients’ experience and perception of the aHUS diagnostic process  
  • 2nd Report (issued 18 Dec 2021) – Article w/ Background   REPORT 2 (pdf):  From Patients’ 1st Symptoms, with Escalation to Specialist Care 
  • 3rd Report  (issued 28 Feb 2022)  Article w/ Background   REPORT 3 (pdf):  Patients’ experience of Specialist Care: the Diagnosis Decisions
  • 4th Report  (issued 10 June 2022)  Article w/ Background   REPORT 4 (pdf):  Impact of process event and patient
    demographic variables on process outcomes

Poll QUESTIONS:  Click HERE to View the 2021 aHUS Diagnostic Survey tool 

Comparison of Experiences and Expectations of Ravulizumab 

Direct Action – aHUS Research

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(Visit our Research Page for Lists of aHUS Research by Topic. Note:  This is only a PARTIAL LISTING of articles available on the aHUS Alliance Global Action website:  Use our site’s SEARCH BAR. See our separate lists below for Diagnosis,  Patient Engagement, Treatment & Withdrawal, and More)

aHUS & COVID-19:  Articles, Information, Resources

COVID Triggers aHUS: 15 Publications (1 March 2022)

COVID 19 Triggers aHUS (12 July 2021)

aHUS Alliance: COVID-19 Info Page

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

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 and 30 April 2020  Atypical HUS & COVID-19 

aHUS & COVID-19 Vaccination (articles)

ARTICLES on the topic of COVID-19

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Patient Experiences & Engagement

(see also National Groups & aHUS Patients around the World)

Launch of a global aHUS Community Advisory Board (CAB) Visit Our aHUS CAB Landing Page  https://bit.ly/GlobalCABaHUS

It’s Time to Re-Define aHUS Patient Engagement

Atypical HUS Caregivers

The Final aHUS Awareness Day? (as classification & terminology change)

The Light & Dark World of aHUS

Answers to aHUS Questions (common FAQs for families to avoid misinformation)

Eculizumab aHUS Treatment: PESaM

Direct Action – aHUS Research

Experiencing aHUS – Viewpoints & Variations

Being an aHUS Trialist

aHUS Health, Well Being, and Work

aHUS Patient Fatigue

Patients as Partners

Patient Engagement: Reality or Buzzwords?

aHUS Patient Centricity

It’s not about My Rare Disease

A Reluctant Advocate (Book pdf)

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NATIONAL GROUPS & aHUS Patients around the World

Australia: new Global Action Trustee, Kerri Grey

Living with aHUS: What would you Say?

aHUS Global Patient Voices

aHUS in Brazil

aHUS in Portugal

aHUS in New Zealand

aHUS in China   (see also Are aHUS Patients in China Different? )

aHUS in Poland

aHUS in Japan

aHUS in Norway

Samko & family: Tale from Slovakia

Learn about international advocacy via our global aHUS Community Advisory Board   https://bit.ly/GlobalCABaHUS

Atypical HUS:  Engagement

  • Atypical HUS Perspectives  A library of aHUS Alliance articles & interviews with Scientists, national aHUS advocacy Groups & aHUS Patients around the world.

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Focus on Children & Young Adults

aHUS & School

aHUS for Youth Leaders, Camps & Sports

Atypical HUS & the Teen Years

Teen transitioning to Adult Nephrology Care

Parent Questions about Childhood aHUS Issues

EDU: Teaching & Learning at Work and School

international consensus, Management of aHUS in Children

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(Visit our Research Page for Lists of aHUS Research by Topic. Note:  This is only a PARTIAL LISTING of articles available on the aHUS Alliance Global Action website:  Use our site’s SEARCH BAR. See our separate lists below for Diagnosis,  Patient Engagement, Treatment & Withdrawal, and More)

Topic Specific Issues

Mental Wellness: Info – Insights – Resources

Meningococcal Infection: Vigilance is Essential

aHUS Adverse Events (AE) Reporting

Atypical HUS Caregivers

aHUS & DGKε : One Genetic problem but Two Diseases

Thrombotic Microangiopathy:  The Need for a Multidisciplinary Approach  

Living with aHUS: What would you Say?

Some side effect- Meningococcal infection

aHUS Pregnancy Counselling

COVID 19 Triggers aHUS

aHUS Nomenclature Project Goup

aHUS Relapse Epilogue:  Patient Monitoring (last of 4 part series)

NICE: Evaluating Ravulizumab for aHUS (Drug access- Guidance, NHS in England & Wales)

Answers to aHUS Questions (common FAQs for families to avoid misinformation)

Dental Health & Kidney Disease

aHUS Webinar, by Dr Marina Noris

A Pillar of Hope (on aHUS/HUS/TMA Registries)

aHUS – Interpretation is Complex

When Good Complement Goes Bad

Atypical HUS & the Teen Years

Rare Disease Patients becoming Rarer in the USA

aHUS Relapse:  3 part Series (Part 1, Part 2, Part 3, Epilogue)

Again, How many aHUS Patients are There?

aHUS Health, Well Being, and Work

aHUS Patient Fatigue

Anti-FH aHUS: a Disease within a Disease

2022 aHUS Therapeutic Drug Landscape: an Overview

2020 aHUS Therapeutic Drug Landscape:  an Overview

Skin: aHUS & TMA

Brain Fog & Kidney Disease

aHUS Care:  The Case for Multidisciplinary Collaboration

aHUS & Pregnancy

Infusions while Traveling Away from Home

Cardiorenal Syndrome: Heart & Kidney Relationship

Vision Issues & aHUS

EDU: Teaching & Learning at Work and School

aHUS Rare Caregivers

Multi-Organ Involvement & Multidisciplinary Care

Event – TMA Symposium: Through the Lens of Atypical HUS

Thrombotic Microangiopathy:  The Need for a Multidisciplinary Approach  

aHUS Care:  The Case for Multidisciplinary Collaboration

Brain Fog & Kidney Disease

Cardiorenal Syndrome: Heart & Kidney RelationshipVision Issues & aHUS

aHUS & Pregnancy

Skin: aHUS & TMA

Vision Issues & aHUS

Thrombotic Microangiopathy:  TMA & aHUS

aHUS Diagnosis

aHUS Classification – Varied Terms & Nomenclature

Transplants & Dialysis

aHUS Research & Publications 

COVID-19 (see listing above)

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Advocacy

Atypical HUS Community Advisory Board –  our aHUS CAB Landing Page  https://bit.ly/GlobalCABaHUS

aHUS Community Advisory Board News: Feb 2023 Report from1st mtg with 3 Pharma & New aHUS CAB Members

Join the aHUS CAB – How to become a Member (with application form)

Direct Action – aHUS Research

Global aHUS Advocacy

Atypical HUS:  Not Like the Others

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

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Interviews

Kerri Grey – Meet the new Trustee of aHUS Alliance Global Action

Kamal D Shah – Founder of aHUS India, NephroPlus co-Founder, global aHUS CAB founding Member

Tara Sam – aHUS in Hong Kong

Joana Preto – aHUS in Portugal

Dr Brad Lewis of Machaon Diagnostics: aHUS genetic testing

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

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Patient Materials & Resources

Atypical HUS 1.0

aHUS Fact & Info Sheets:  2023-Sept-2024 Edition Prior Editions:  2022-Sept-2023 Edition    2020-Sept 2021 Edition    2019 Edition

Know aHUS: Know Us

Info Center :   aHUS materials in Spanish and in French,  Info & Materials for aHUS Awareness Day & Rare Disease Day, results from global Polls & Patient Research Agenda  , Press Kit  aHUS Research – Organized by Topic

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

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Clinical Trials & Drug R/D

Recruiting to aHUS Trials is Not Easy

aHUS Clinical Trials: Difficult to Create & Conduct

aHUS Uncertainty is a Certainty

Being an aHUS Trialist

2022 aHUS Therapeutic Drug Landscape: an Overview

2020 aHUS Therapeutic Drug Landscape:  an Overview

ClinicalTrials.gov  Atypical HUS (trials)

ClinicalTrials.gov  Thrombotic Microangiopathies (trials)

Breaking Down Barriers in aHUS Clinical Trials

Clinical Trial Watch – Articles

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

Generium   Eliziara, 1st biosimilar to Eculizumab

Omeros     Narsoplimab     UK Collaboration

Roche   Crovalimab, NCT04861259

Samsung Bioepis Co. Ltd   SB12– potential biosimilar to eculizumab

aHUS Drug R & D Therapeutics, 2018

Small Molecule Factor D Inhibitors

2020 aHUS Therapeutic Drug Overview

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Drug Access & Treatment (see also Topic-Specific ISSUES)

aHUS Adverse Events & Patient Reported Outcomes

England recommends Ravulizumab for aHUS

Scotland approves Ravulizumab for aHUS

Evidence Helps aHUS Eculizumab Access

Global Drug Access Panel Proposal, South Africa

2020 aHUS Therapeutic Drug Landscape:  an Overview

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

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

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

2018 aHUS Therapeutic Drugs, Market Factors

Stopping Eculizumab: On Treatment Withdrawal

Ravulizumab:  Cost effectiveness & Patient Quality of Life

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(Visit our Research Page for Lists of aHUS Research by Topic. Note:  This is only a PARTIAL LISTING of articles available on the aHUS Alliance Global Action website:  Use our site’s SEARCH BAR. See our separate lists below for Diagnosis,  Patient Engagement, Treatment & Withdrawal, and More)

Social Media & YouTube

Facebook:  aHUS Alliance

Twitter:    @aHUSAllianceAct    and  @aHUS24Sept (aHUS Awareness Day)

Atypical HUS Clinical Channel  YouTube

Atypical HUS Patient Voice Channel YouTube

Info Centre:  aHUS Social Media

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National aHUS Patient Advocacy: Network

Is your Nation not Listed?  Learn about the R.O.W. (Rest of the World)
Connect with the aHUS Alliance Global Action Team