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Read more about the article Let the science give the answers

Let the science give the answers

  • Post author:ahusalliance
  • Post published:January 30, 2019
  • Post category:Featured
  • Post comments:0 Comments

aHUS Patients contributed two questions to the aHUS Patients Research Agenda: 1. Is there an optimal way in which a complement…

Continue ReadingLet the science give the answers
Read more about the article No one said it would be easy

No one said it would be easy

  • Post author:ahusalliance
  • Post published:January 27, 2019
  • Post category:Featured
  • Post comments:0 Comments

The reluctant advocate story continues: aHUSUK had received the Evaluation Consideration Document the week before Rare Disease Day 2014 and we…

Continue ReadingNo one said it would be easy
Read more about the article aHUS Trials Watch 7

aHUS Trials Watch 7

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

News announced  in recent days that, unlike in the USA , Europe does not intend to extend the patent for Eculizumab…

Continue ReadingaHUS Trials Watch 7
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…

Continue ReadingaHUS Transplants-Abstract Video
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
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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
  • Post comments:0 Comments

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
  • Post comments:0 Comments

The Zen of Living with a Rare Disease: a 4 step approach

Continue ReadingThe Zen of Living with a Rare Disease
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
  • Post comments:0 Comments

Rare Disease Day 2019: Atypical HUS

Continue ReadingRare Disease Day 2019: Atypical HUS
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