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Read more about the article aHUS Transplants-Abstract Video

aHUS Transplants-Abstract Video

  • Post author:ahusalliance
  • Post published:January 24, 2019
  • Post category:Featured
  • Post comments:0 Comments

The aHUS alliance affiliates put the question: Is there a significant difference in outcome between having a complement inhibitor before or…

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Read more about the article Rare Disease Day 2014 across borders

Rare Disease Day 2014 across borders

  • Post author:ahusalliance
  • Post published:January 23, 2019
  • Post category:Featured
  • Post comments:0 Comments

The aHUS Alliance continues its series ‘The Reluctant Advocate’, chronicling the UK’s journey to gain access to eculizumab for treating those…

Continue ReadingRare Disease Day 2014 across borders
Read more about the article Awareness breakthrough or what?

Awareness breakthrough or what?

  • Post author:ahusalliance
  • Post published:January 18, 2019
  • Post category:Featured
  • Post comments:0 Comments

A large part of patient advocacy is about raising awareness of the illness they suffer. This is particularly true of rare…

Continue ReadingAwareness breakthrough or what?
Read more about the article Transplant research answers that matter to aHUS patients

Transplant research answers that matter to aHUS patients

  • Post author:ahusalliance
  • Post published:January 13, 2019
  • Post category:Featured
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These days a kidney transplant may not feature much in the thoughts of new onset aHUS patients, most of them can…

Continue ReadingTransplant research answers that matter to aHUS patients
Read more about the article The Zen of Living with a Rare Disease

The Zen of Living with a Rare Disease

  • Post author:ahusalliance
  • Post published:January 9, 2019
  • Post category:Featured
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The Zen of Living with a Rare Disease: a 4 step approach

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Read more about the article Rare Disease Day 2019:  Atypical HUS

Rare Disease Day 2019: Atypical HUS

  • Post author:ahusalliance
  • Post published:January 3, 2019
  • Post category:Featured
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Rare Disease Day 2019: Atypical HUS

Continue ReadingRare Disease Day 2019: Atypical HUS
Read more about the article What will be their fate?

What will be their fate?

  • Post author:ahusalliance
  • Post published:January 2, 2019
  • Post category:Featured
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The NICE evaluation meeting had taken place in December ( see Relucant Advocate story here) so aHUS families in England entered…

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Read more about the article Challenges for the new aHUS year- “Bring it on”

Challenges for the new aHUS year- “Bring it on”

  • Post author:ahusalliance
  • Post published:December 27, 2018
  • Post category:Featured
  • Post comments:0 Comments

Another year has ended for those affected by aHUS. For some sadly it would have proven to have been their last.…

Continue ReadingChallenges for the new aHUS year- “Bring it on”
Read more about the article Advocacy lessons learned so far

Advocacy lessons learned so far

  • Post author:ahusalliance
  • Post published:December 21, 2018
  • Post category:Featured
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By Christmas 2013 it was over two years since aHUSUK, and my part in it as a reluctant advocate, had begun.…

Continue ReadingAdvocacy lessons learned so far
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