Atypical HUS – RESOURCES

 

Atypical HUS – RESOURCES

 

AHUS alliance Global Action own Research

Comparison of Experiences and Expectations of Ravulizumab 

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

 

 

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

Vol 3 Newsletter (Dec 2020)

Vol 2 Newsletter (Aug 2020)

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

 

 

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

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 (Bookpdf)

 

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)

COVID 19 Triggers aHUS

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)

 

 

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

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