Atypical HUS PROs: Patient Reported Outcomes
What are patient reported outcomes (PROS)? The aHUS Alliance Global Action team look at PROs and their importance in the aHUS space.
Long term aHUS effects
Long term aHUS disease, diagnosis and treatment legacies on both physical and mental health have featured in two aHUS Patient Research…
What would stop eculizumab working for aHUS?
Eculizumab was approved by the US Food and Drugs Administration for PNH for 15 years ago on 16 March. This September…
Can aHUS treatment be affordable for all?
A very important topic for many aHUS patients around the world with an unmet need. Patients have included the topic in…
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.…
aHUS are we there yet?
Last summer, aHUS alliance’s Twitter Account featured the plight of a patient who, after a week in hospital, had been found…
aHUS Diagnosis Process – Report 2
The second article in the series about the aHUS Diagnosis Process has been published on the website today. Research made possible…
Living with aHUS- what would you say?
If asked by health policy decision makers, and with a 500 words limit, how would you answer the question "how does…
Good complement goes aHUS bad
OK, so HUS is caused by e.coli toxins and aHUS results from Complement dysregulation. Both are thrombotic microangiopathies. HUS is…
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