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.
Let the science give the answers
aHUS Patients contributed two questions to the aHUS Patients Research Agenda: 1. Is there an optimal way in which a complement…
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…
aHUS Trials Watch 7
News announced in recent days that, unlike in the USA , Europe does not intend to extend the patent for Eculizumab…
aHUS Transplants-Abstract Video
The aHUS alliance affiliates put the question: Is there a significant difference in outcome between having a complement inhibitor before or…
Rare Disease Day 2014 across borders
The aHUS Alliance continues its series ‘The Reluctant Advocate’, chronicling the UK’s journey to gain access to eculizumab for treating those…
Awareness breakthrough or what?
A large part of patient advocacy is about raising awareness of the illness they suffer. This is particularly true of rare…
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