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Read more about the article Nice decision just world class

Nice decision just world class

  • Post author:ahusalliance
  • Post published:February 16, 2019
  • Post category:Uncategorized
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More from the reluctant advocate. The July meeting of NICE left us worried. The meeting had been held on 23rd July…

Continue ReadingNice decision just world class
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
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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 If we can be of help, help patients.

If we can be of help, help patients.

  • Post author:ahusalliance
  • Post published:October 10, 2018
  • Post category:Uncategorized
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By May 2013, after nearly three months of campaigning by the “few” and getting the issue to the attention of the…

Continue ReadingIf we can be of help, help patients.
Read more about the article Good will come together?

Good will come together?

  • Post author:ahusalliance
  • Post published:September 29, 2018
  • Post category:Uncategorized
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Some key issues exist for atypical HUS patient groups regardless of national borders, which launched the aHUS Alliance on 2013 Rare Disease Day, 28 February. How momentum among nations impacted aHUSUK recognition that atypical HUS advocacy collaboration brings new focus: good will come together.

Continue ReadingGood will come together?
Read more about the article ERKNET: aHUS and transplants

ERKNET: aHUS and transplants

  • Post author:ahusalliance
  • Post published:September 18, 2018
  • Post category:Uncategorized
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ERKNET’s website hosts a programme of webinars ( live talks over the  internet) about Rare Renal Diseases . The talk today…

Continue ReadingERKNET: aHUS and transplants
Read more about the article Atypical HUS & School

Atypical HUS & School

  • Post author:ahusalliance
  • Post published:September 11, 2018
  • Post category:Uncategorized
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Atypical HUS and School: Information about teaching & learning. Learners of any age may be affected by chronic illness or a rare disease like aHUS. What schools and employers should know about people living with atypical hemolytic uremic syndrome (aHUS)

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Read more about the article aHUS Trials Watch 6

aHUS Trials Watch 6

  • Post author:ahusalliance
  • Post published:September 7, 2018
  • Post category:Uncategorized
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As aHUS Awareness Day approaches it is timely to be aware of developments in the next version of eculizumab , the…

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Read more about the article Publication of a book about aHUS in French

Publication of a book about aHUS in French

  • Post author:ahusalliance
  • Post published:August 27, 2018
  • Post category:Uncategorized
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Nicolas Mullier of AIRG France has announced that a book about aHUS has been published. Nicolas tells about the book and…

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Read more about the article Publication d’un livre sur SHUa en Francais

Publication d’un livre sur SHUa en Francais

  • Post author:ahusalliance
  • Post published:August 27, 2018
  • Post category:Uncategorized
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Grande nouvelle !!! Le livret AIRG sur le Syndrome Hémolytique et Urémique Atypique (SHUa) est enfin arrivé !! Nous l’attendions depuis…

Continue ReadingPublication d’un livre sur SHUa en Francais
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