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

aHUS Clinicians & Investigators

aHUS & TMA Study Centers

 

Patient Experiences & Engagement

A Reluctant Advocate (Book)

Patients as Partners

Patient Engagement: Reality or Buzzwords?

aHUS Patient Centricity

aHUS Global Patient Voices

aHUS in China

aHUS in Poland

aHUS in Japan

Samko & family: Tale from Slovakia

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

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 

 

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

ClinicalTrials.gov  Atypical HUS (trials)

ClinicalTrials.gov  Thrombotic Microangiopathies (trials)

Breaking Barriers in aHUS Clinical Trials

Clinical Trial Watch, articles

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