Atypical HUS – RESOURCES

About aHUS – General Info

Know aHUS:  Know US

aHUS PRESS KIT

Info Centre 

Special Events – held Annually

aHUS Awareness Day (24 Sept) & Rare Disease DayInfo & Resources

See our Campaigns on Twitter: @aHUS24Sept & @aHUSallianceAct

2021 FAQs for aHUS Awareness Day

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  (for Articles on specific nations, see below: Patient Engagement & Experience)

aHUS Clinicians & Investigators

aHUS & TMA Study Centers

aHUS Global Advocate:  NEWSLETTER

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

aHUS Global Advocate Newsletters:  Archived Volumes

1st Anniversary Edition   Vol 4 Newsletter (June 2021)

Vol 3 Newsletter (Dec 2020)

Vol 2 Newsletter (Aug 2020)

INAUGURAL Edition – aHUS Allliance Action Newsletter 1 (July 2020)

aHUS alliance Global Action – our own Research

Comparison of Experiences and Expectations of Ravulizumab 

Direct Action – aHUS Research

Note:  This page contains a PARTIAL LISTING of articles available on

the aHUS Alliance Global Action website:  Use our SEARCH BAR.

aHUS & COVID-19:  Articles, Information, Resources

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

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 and 30 April 2020  Atypical HUS & COVID-19 

aHUS & COVID-19 Vaccination (articles)

aHUS and COVID-19 Vaccine Update

aHUS and COVID-19 Vaccinations

COVID-19 Jabs:  Follow Up

ARTICLES on the topic of COVID-19

Like an Agatha Christie Story!  (13 Aug 2020)  A look at COVID-19 & complement over-activation

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

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

Patient Experiences & Engagement

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)

Atypical HUS: Patients around the World

aHUS Global Patient Voices

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

Atypical HUS:  Engagement

Atypical HUS:  Not Like the Others

TMA Boston 

Myths of Patient Engagement

Collaborative Partnership in Research: Global aHUS Registry

aHUS Global Patients’ Research Agenda

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

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

Issue specific Topics

(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 Pregnancy Counselling

COVID 19 Triggers aHUS

aHUS Nomenclature Project Goup

aHUS Relapse:  Epilogue (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)

Again, How many aHUS Patients are There?

aHUS Health, Well Being, and Work

aHUS Patient Fatigue

Anti-FH aHUS: a Disease within a Disease

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

Thrombotic Microangiopathy:  TMA & aHUS

Complement-Mediated TMA Awareness – Did you Know it’s aHUS?

The aHUS Diagnosis Challenge

aHUS: A ‘Constellation of Symptoms’ (Dr A Chang)

Is it aHUS? Perhaps it’s TTO, STEC-HUS, or Another TMA

aHUS: Is its End Really Nigh?

aHUS and TMA Syndromes Consensus

Thrombotic Microangiopathy:  Through the Lens of aHUS (article) (TMA Boston Symposium: 9 Videos)

TMA 65 Years Old Today

aHUS & TMA Study Centers

aHUS Diagnosis

Update:  aHUS Diagnosis Process Study

A Tale of Two aHUS Diagnoses

The aHUS Diagnostic Process

aHUS  “A Constellation of Symptoms”

The aHUS Diagnosis Challenge

aHUS Diagnosis:  Time is of the Essence

The Challenge of aHUS Secondary Diagnosis

aHUS Diagnosis & Treatment:  KDIGO Controversies Conference

Is it aHUS?  Perhaps its TTP, STEC-HUS, or another TMA

Transplants & Dialysis

aHUS Kidney Transplants – More Insights

aHUS Transplants Simplified

That aHUS Transplant Question

Transplant Research Answers that Matter to aHUS Patients

Transplant Research & aHUS

Dialysis Diaries (a 4 Part series)aHUS & Dialysis,  Diets & Fluids,   Heart Problems,   Long Term Complications

aHUS & Dialysis:  Lab-Grown Kidneys: Are We There Yet?

aHUS Research & Publications 

COVID-19 (see listing above)

aHUS Classification – Nomenclature

aHUS Nomenclature Project Group

A Babble of Names: What type of aHUS?

TMA – Semantics are Important

aHUS – a Constellation of Symptoms

Complement-mediated TMA Awareness- Did you know it was aHUS?

TTP and aHUS:  Different Diseases, but still Linked

What do you Call It?

A Rose by any Other Name – What’s the Fuss?

Advocacy

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

Interviews

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 & Info Sheets:   2020-Sept 2021 Edition     Previous Yr:  2019 Edition

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

aHUS Uncertainty is a Certainty

Being an aHUS Trialist

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

aHUS Trial Watch 12A (re Pediatric Trial posted for Crovalimab)

aHUS Trial Watch 12 (Crovalimab update)

aHUS Clinical Trials Watch 11 – Crovalizumab (Jan 2021)

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

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

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

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

Decision Process: Discontinuing aHUS Treatment

Evidence Helps Eculizumab Access

Eculizumab Withdrawal – Safe & Reasonable?

Eculizumab Withdrawal Risk Profiling (Acosta  Medina Group, re TMA at ASH20)

StopEcu: The French Study Reports

Withdrawal Evidence Patients Need to Know

aHUS  “A Constellation of Symptoms”

Ravulizumab:  Cost effectiveness & Patient Quality of Life

Ravulizumab Costs Less over a Lifetime

Is Ravulizumab Affordable for aHUS?

aHUS Community Answers the Call

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 SEARCH BAR.

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

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

info@aHUSallianceAction.org