An aHUS Patient Entrepreneur ?
After reading an inspirational article* about Kamal Shah , which featured on the alliance’s social media recently, I was reminded about…
aHUS Registry Report: (aHUS) Registry
The alliance relationship with the atypical Hemolytic-Uremic Syndrome( aHUS) Registry (NCT01522183) is now well into its fifth year. This observational non…
Eculizumab Safety
Following on from its recent article about the safety of eculizumab ( see here ) the alliance has looked at two…
“Away from home” Eculizumab infusions
Within the aHUS Patients' Research Agenda is a topic about how aHUS affects work and school. A big question with so…
aHUS Awareness Day 2019 -Video
2019 aHUS Awareness Day - Atypical HUS families around the world are invited to participate in this aHUS Alliance outreach & advocacy project for 24 September. Slideshow project details for patients and caregivers affected by the rare disease aHUS.
Global Patient Advocacy-aHUS ROW
When the six European national aHUS organisations gathered in February 2013 for the first meeting of what was to become the…
Eculizumab- safe or not?
aHUS patients and carers raised the research topic : "Can the side effects of treatment using a complement inhibitor be distinguished…
Broader picture of aHUS and greater outreach
As 2014 progressed it was noticeable how much aHUSUK had become aware of other countries and their aHUS challenges and focuses.…
£2 billion a week and rising
The reluctant advocate journey continues. By 2014 it was not unusual for aHUSUK to get emails from news journalists from newspapers…
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