What’s New in aHUS Research? Jan 2023 Edition
Sometimes there are fascinating articles related to atypical HUS which people might miss, and it’s then that it’s particularly helpful to…
aHUS Global Action – Meet Trustee K Grey
As advocates for the rare disease atypical haemolytic uraemic syndrome (atypical HUS), there’s only one group of patients and caregivers whose…
aHUS what is really happening?
Listening to some aHUS people on social media there is a sense that all are not satisfied with what is happening…
Rare Disease Day 2023- aHUS Community Project
On February 28, 2023, the world will join together to raise awareness for rare diseases like atypical HUS. Recognized annually on…
A ChatGPT about aHUS (and that Christmas question)
aHUS: Rare Blood Disorder This is a chat Global Action had with ChatGPT about aHUS. ChatGPT is a very new online…
HST TMA Is It aHUS ?
- An Hematopoietic Stem Cell Transplant (HSCT) is a way to treat some malignant and benign diseases. The transplant replaces disease…
Study of the aHUS Diagnosis Process- the “whys”, “whats” and “hows”
It is now over two years ago that Global Action began a major study of the aHUS Diagnosis Process, it is…
aHUS adverse events reporting
So adverse events are being reported. In USA over 4500 per year on average for eculizumab are reported to the FDA…
aHUS adverse events and patient reported outcomes
aHUS patients in clinical trials are monitored for adverse events and personal outcomes experience while on treatment. Adverse events have been…
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