“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…
Here comes the sun
The Reluctant Advocate journey continues. aHUSUK formally responded to the Evaluation Consultation Document by 25 March 2014 as requested by NICE.…
A new global direction presents itself
By now followers of the Reluctant Advocate will no doubt have grasped the expansion of work that naturally occurs when running…
Finding a New Normal after Diagnosis
One mother’s personal story about her young son’s diagnosis with atypical HUS. Connected to the broader themes of what happens after a rare disease diagnosis as working parents strive to navigate, childcare, emotional stress, and family impacts.
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