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…
Transplant research answers that matter to aHUS patients
These days a kidney transplant may not feature much in the thoughts of new onset aHUS patients, most of them can…
What will be their fate?
The NICE evaluation meeting had taken place in December ( see Relucant Advocate story here) so aHUS families in England entered…
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