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…
Call to action USA aHUS Patients
In Article 462 notice was given of a study to help USA rare disease patients in general. and aHUS patients in…
aHUS Diagnosis Process-First Report
The first report on what 227 aHUS patients from around the world told us about their aHUS diagnosis experience and their…
It’s not about My Rare Disease
Support for rare disease patients and their families - what does that look like, and how does it address their needs? The aHUS Alliance looks behind the medical issues of living with a rare disease to focus on the many factors involved with the struggle to live a meaningful life centered on wellness.
No one said it would be easy
The reluctant advocate story continues: aHUSUK had received the Evaluation Consideration Document the week before Rare Disease Day 2014 and we…