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Author: ahusalliance

This author has written 437 articles
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Read more about the article Finding Baby Bodmer- Learning about aHUS

Finding Baby Bodmer- Learning about aHUS

  • Post author:ahusalliance
  • Post published:February 13, 2019
  • Post category:Uncategorized
  • Post comments:0 Comments

Another pathway for the reluctant advocate. All aHUS Patients and their families have had their own aHUS experience. When it hit…

Continue ReadingFinding Baby Bodmer- Learning about aHUS
Read more about the article Broader picture of aHUS and greater outreach

Broader picture of aHUS and greater outreach

  • Post author:ahusalliance
  • Post published:February 11, 2019
  • Post category:Featured
  • Post comments:0 Comments

As 2014 progressed it was noticeable how much aHUSUK had  become aware of other countries and their aHUS challenges and focuses.…

Continue ReadingBroader picture of aHUS and greater outreach
Read more about the article £2 billion a week and rising

£2 billion a week and rising

  • Post author:ahusalliance
  • Post published:February 10, 2019
  • Post category:Featured
  • Post comments:0 Comments

The reluctant advocate journey continues. By 2014 it was not unusual for aHUSUK to get emails from news journalists  from newspapers…

Continue Reading£2 billion a week and rising
Read more about the article Here comes the sun

Here comes the sun

  • Post author:ahusalliance
  • Post published:February 5, 2019
  • Post category:Featured
  • Post comments:0 Comments

The Reluctant Advocate journey continues. aHUSUK formally responded to the Evaluation Consultation Document by 25 March 2014 as requested by NICE.…

Continue ReadingHere comes the sun
Read more about the article A new global direction presents itself

A new global direction presents itself

  • Post author:ahusalliance
  • Post published:February 2, 2019
  • Post category:Featured
  • Post comments:0 Comments

By now followers of the Reluctant Advocate will no doubt have grasped the expansion of work that naturally occurs when running…

Continue ReadingA new global direction presents itself
Read more about the article Finding a New Normal after Diagnosis

Finding a New Normal after Diagnosis

  • Post author:ahusalliance
  • Post published:January 31, 2019
  • Post category:Featured
  • Post comments:0 Comments

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.

Continue ReadingFinding a New Normal after Diagnosis
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
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