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…
Some side effect- Meningococcal infection!
The side effects of treatment and residual ailments of an aHUS onset featured highly by aHUS families in the contribution to…
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…
Challenges for the new aHUS year- “Bring it on”
Another year has ended for those affected by aHUS. For some sadly it would have proven to have been their last.…
Advocacy lessons learned so far
By Christmas 2013 it was over two years since aHUSUK, and my part in it as a reluctant advocate, had begun.…
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