Atypical HUS - RESOURCES 2020 version

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

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 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

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

aHUS global Town Hall – a virtual mtg for aHUS Day 2022

Launch of a global aHUS Community Advisory Board (CAB)

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)

NATIONAL GROUPS & aHUS Patients around the World

Living with aHUS: What would you Say?

aHUS Global Patient Voices

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: 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 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?

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

HST-TMA Is It 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

aHUS Diagnosis: 2021 Survey of Patient Experiences (4 Reports)

Study of the aHUS Diagnosis Process- the “whys”, “whats” and “hows”

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 – Varied Terms & Nomenclature

aHUS is Confusing

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

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

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

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

Patient materials & Resources

Atypical HUS 1.0

aHUS Fact & Info Sheets: 2022-Sept-2023 Edition 2020-Sept 2021 Edition Previous Yr: 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