About aHUS | Special Events | Clinical Information | Networks and Support | Patient Materials & Resources |aHUS Global Advocate: NEWSLETTER |aHUS alliance Global Action | aHUS & COVID-19 | Patient Experiences & Engagement | National & Global |Children & Young Adults | Advocacy | Interviews | 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
Image Gallery: Atypical HUS info & advocacy
Atypical HUS 1.0 – to ‘QuickStart’ your search for Info & Resources
aHUS Community Advisory Board (CAB)
2023 – QR Code Sheet: 1 Print Friendly page of select Resources
2022 Atypical HUS Therapeutic Drugs – a 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
Special Events – held Annually
aHUS Awareness Day (24 Sept) & Rare Disease Day – Info & Resources. Links to our current Campaigns
See our Campaigns on Twitter: @aHUS24Sept & @aHUSallianceAct
2024 SEPT 2025 – FACT SHEET (released for 24 Sept: 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
Atypical HUS Clinical Channel (YouTube)
aHUS Research & Publications: a Clinical ‘Library’
Networks and Support
Nations: aHUS Advocacy & Patient Groups (for Articles on specific nations, see below: Patient Engagement & Experience)
aHUS Clinicians & Investigators
Global aHUS Community Advisory Board (CAB) Visit Our aHUS CAB Landing Page https://bit.ly/GlobalCABaHUS
Patient Materials & Resources
aHUS Fact & Info Sheets: 2022-Sept-2023 Edition 2020-Sept 2021 Edition Previous Yr: 2019 Edition
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 Expert Centres, Attributes
– Patient Materials – to Print, Use, Share
• Fact Sheet: 2023-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)
aHUS Global Advocate: NEWSLETTER
aHUS NEWSLETTER (Intro & Subscription Info): aHUS Alliance Launches its Newsletter
aHUS Global Advocate Newsletters: Archived Volumes
View ALL EDITIONS & Newsletter information HERE : https://bit.ly/aHUSglobalNewsletter
A few past Newsletter Selections include:
- Vol 11 Newsletter (July 2024)
- Vol 10 Newsletter (June 2024)
- Vol 9 Newsletter (Mar 2024)
- Vol 8 Newsletter (Nov 2023)
- Vol 7 Newsletter (May 2023)
- Vol 6 Newsletter (Jan 2023)
- Vol 5 Newsletter (Oct 2021)
- 1st Anniversary Edition Vol 4 Newsletter (June 2021)
- Vol 3 Newsletter (Dec 2020)
- Vol 2 Newsletter (Aug 2020)
aHUS alliance Global Action – our own Research
2024 aHUS Global Poll – ‘Ten Years On’
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
(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
(FMI & Updates: https://bit.ly/aHUSandCOVID19info
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)
ARTICLES on the topic of COVID-19
- Micro Clots in Long aHUS and COVID (July 2023)
- 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
(see also National Groups & aHUS Patients around the World)
Exploring the Global aHUS Patients’ Research Agenda – SERIES: In depth articles on 15 key questions
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
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
Experiencing aHUS – Viewpoints & Variations
aHUS Health, Well Being, and Work
Patient Engagement: Reality or Buzzwords?
It’s not about My Rare Disease
NATIONAL GROUPS & aHUS Patients around the World
Australia: new Global Action Trustee, Kerri Grey
Living with aHUS: What would you Say?
aHUS in China (see also Are aHUS Patients in China Different? )
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.
(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
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 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
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
Anti-FH aHUS: a Disease within a Disease
2022 aHUS Therapeutic Drug Landscape: an Overview
2020 aHUS Therapeutic Drug Landscape: an Overview
aHUS Care: The Case for Multidisciplinary Collaboration
Infusions while Traveling Away from Home
Cardiorenal Syndrome: Heart & Kidney Relationship
EDU: Teaching & Learning at Work and School
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
Thrombotic Microangiopathy: TMA & aHUS
- Thrombotic Microangiopathy: Through the Lens of aHUS (article) (TMA Boston Symposium: 9 Videos)
aHUS Diagnosis
aHUS Classification – Varied Terms & Nomenclature
Transplants & Dialysis
- Dialysis Diaries (a 4 Part series): aHUS & Dialysis, Diets & Fluids, Heart Problems, Long Term Complications
- aHUS & Dialysis: Lab-Grown Kidneys: Are We There Yet?
COVID-19 (see listing above)
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)
Atypical HUS: Not Like the Others
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
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
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
Clinical Trials & Drug R/D
Recruiting to aHUS Trials is Not Easy
aHUS Clinical Trials: Difficult to Create & Conduct
aHUS Uncertainty is a Certainty
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 20: New Partnership with ClinicalTrials.EU
- aHUS Trials Watch 19: FDA approves Oral Iptacopan for PNH
- aHUS Clinical Trials Watch 11 – Crovalizumab (Jan 2021)
- aHUS Trials Watch 10 (8 March 2020) Toronto Complement Conference, NCT04288713, and COVID-19
Akari Therapeutics Coversin, NCT03829449
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
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
- Eculizumab Withdrawal Risk Profiling (Acosta Medina Group, re TMA at ASH20)
Ravulizumab: Cost effectiveness & Patient Quality of Life
(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
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
Is your Nation not Listed? Learn about the R.O.W. (Rest of the World)
Connect with the aHUS Alliance Global Action Team
