Atypical HUS – RESOURCES

 

Atypical HUS – RESOURCES

 

 

General Info

Know aHUS:  Know US

aHUS PRESS KIT

Info Centre 

 

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:  Archives

aHUS Allliance Action Newsletter 1 (July 2020)

 

 

aHUS & COVID-19:  Articles, Information, Resources

aHUS Alliance: Articles

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

aHUS Alliance:  Topic-Specific Articles

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

aHUS Alliance:  Resources

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

30 April 2020  Atypical HUS & COVID-19 

 

 

Patient Experiences & Engagement

aHUS Health, Well Being, and Work

aHUS Patient Fatigue

A Reluctant Advocate (Book)

Patients as Partners

Patient Engagement: Reality or Buzzwords?

aHUS Patient Centricity

It’s not about My Rare Disease

Atypical HUS: Patients around the World

aHUS Global Patient Voices

aHUS in China

aHUS in Poland

aHUS in Japan

aHUS in Norway

Samko & family: Tale from Slovakia

Atypical HUS:  Engagement

TMA Boston 

Myths of Patient Engagement

Collaborative Partnership in Research: Global aHUS Registry

aHUS Global Patients’ Research Agenda

 

 

Focus on Children & Young Adults

aHUS & School

aHUS for Youth Leaders, Camps & Sports

Teen transitioning to Adult Nephrology Care

Parent Questions about Childhood aHUS Issues

international consensus, Management of aHUS in Children

 

Issue specific Topics

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

Dialysis Diaries:  aHUS & Dialysis, Diets & Fluids, Heart Problems, Long Term Complications

Skin: aHUS & TMA

Brain Fog & Kidney Disease

aHUS Care:  The Case for Multidisciplinary Collaboration

aHUS & Pregnancy

Infusions while Traveling Away from Home

Transplant Research & aHUS

Cardiorenal Syndrome: Heart & Kidney Relationship

Vision Issues & aHUS

EDU: Teaching & Learning at Work and School

aHUS Rare Caregivers

aHUS Research & Publications 

COVID-19 (see listing above)

 

Advocacy

Global aHUS Advocacy

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 Sheets (Ex: 2019 Versions)

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

2020 aHUS Therapeutic Drug Landscape:  an Overview

ClinicalTrials.gov  Atypical HUS (trials)

ClinicalTrials.gov  Thrombotic Microangiopathies (trials)

Breaking Barriers in aHUS Clinical Trials

Clinical Trial Watch, articles

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

Omeros     Narsoplimab     UK Collaboration

Generium   Eliziara, 1st biosimilar to Eculizumab

Samsung Bioepis Co. Ltd   SB12- potential biosimilar to eculizumab

aHUS Drug R & D Therapeutics

Small Molecule Factor D Inhibitors

 

Drug access

Global Drug Access Panel Proposal, South Africa

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

2018 aHUS Therapeutic Drugs, Market Factors

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

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

 

 

 

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