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…
Kamal is an aHUS Super Hero
Kamal Shah is a Director/Trustee of aHUS alliance Global Action. He first had aHUS over 25 years ago. It was triggered…
NEW ZEALAND
“De Novo” aHUS is bad luck
It has been known for decades that what is called " de novo " aHUS can happen to a kidney donor…
A Community Advisory Board for aHUS
Today it can be announced that a Global aHUS Community Advisory Board (CAB) has been formed. What is a Community Advisory…
An aHUS diagnosis, lucky or what?
It is hard to believe that it will soon be two years since the aHUS Diagnosis Process project began. It began…
Future effects of aHUS and its treatment
A number of questions in the RDD2022 video are about what will happen to patients in the future due to the…
Screening for aHUS at birth
Most babies are born healthy. Even those susceptible to aHUS due to genetic abnormalities are born healthy. Although it is rare,…
Incomplete aHUS penetrance in families
Although aHUS has genetic causes, in the majority of cases it is found that the patient is the only one in…
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…