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.
When the six European national aHUS organisations gathered in February 2013 for the first meeting of what was to become the…
The aHUS alliance has a long association with the Global aHUS Registry and has a place on its Scientific Advisory Board…
aHUS patients and carers raised the research topic : "Can the side effects of treatment using a complement inhibitor be distinguished…
As 2014 progressed it was noticeable how much aHUSUK had become aware of other countries and their aHUS challenges and focuses.…
The reluctant advocate journey continues. By 2014 it was not unusual for aHUSUK to get emails from news journalists from newspapers…
The Reluctant Advocate journey continues. aHUSUK formally responded to the Evaluation Consultation Document by 25 March 2014 as requested by NICE.…
By now followers of the Reluctant Advocate will no doubt have grasped the expansion of work that naturally occurs when running…
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.