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…
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…
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.…
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…
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…
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…
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…
Out of more than 7000 rare diseases, only an estimated 5% have an approved treatment or therapy (Rare Disease Day, FAQs). Currently eculizumab is the only drug approved to treat…
The aHUS Alliance presents issues and information from varied perspectives within the atypical HUS arena. Amplifying the patient voice in over 30 countries, we present this series of original content on topics related to the rare disease atypical HUS with articles focused on key interests of patients, caregivers, physicians, researchers and other stakeholders,