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Treatment for all with aHUS?

A question which featured a number of times in the Rare Disease Day video was about access to complement inhibitors for everyone with aHUS who needs them. This is a…

Ring out the aHUS Bell for New Year 2017

During the first aHUS Awareness Day activities in 2015, Professor Bernard S Kaplan of The Children's Hospital of Philadelphia wrote a tribute to Prof. Conrad von Gasser and a brief…

aHUS Community Advisory Board News

Two updates on the Global aHUS Community Advisory Board. There is some information about the inaugural set of CAB / PHARMA meetings in November 2022. But firstly news about three…

A call for interest in joining the aHUS CAB

This time last year a couple of dozen people with an interest in global aHUS advocacy were discussing and deciding on the creation of a Community Advisory Board for aHUS.…

What does an aHUS patient look like

Let us kick off the responses to the RDD2022 Video with a couple of questions about the characteristics of aHUS patients. I may have written in the past that if…

2021 FAQs – FACTS about Atypical HUS

aHUS Awareness Day 2021 - Answers to FAQs Finding information about any rare disease is challenging, and perhaps more so for an ultra rare disease such as atypical hemolytic uremic…

Experiencing aHUS – Viewpoints & Variations

Article No. 425 30 March 2021 Dealing with the rare disease atypical HUS is difficult, for both patients and for those involved with their care. It’s difficult for parents to…

2020 Atypical HUS Therapeutic Drug Overview

Atypical HUS: Research & Drug Development Landscape 2020 As the year 2020 continues to be shaped in terms of ‘The Year of COVID-19’, research related to the pandemic…