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…
YOU’VE GOT aHUS!
The third article in the series about the aHUS Diagnosis Process is published today. Rare Disease Day 2022 The article covers…
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…
One genetic problem but two diseases
Take "diacylglycerol kinase " and add a "syndrome" throw in a letter from the Greek alphabet " ε" and you have…
Ravulizumab -Superwoman juice?
The portrayal of rare diseases in the media can be both positive and detrimental. It can be sensational and political. It…
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