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Read more about the article aHUS Global Action – Meet Trustee K Grey

aHUS Global Action – Meet Trustee K Grey

  • Post author:Linda Burke
  • Post published:January 28, 2023
  • Post category:Featured
  • Post comments:1 Comment

As advocates for the rare disease atypical haemolytic uraemic syndrome (atypical HUS), there’s only one group of patients and caregivers whose…

Continue ReadingaHUS Global Action – Meet Trustee K Grey
Read more about the article aHUS what is really happening?

aHUS what is really happening?

  • Post author:Len Woodward
  • Post published:January 21, 2023
  • Post category:Featured/News
  • Post comments:0 Comments

Listening to some aHUS people on social media there is a sense that all are not satisfied with what is happening…

Continue ReadingaHUS what is really happening?
Read more about the article Rare Disease Day 2023- aHUS Community Project

Rare Disease Day 2023- aHUS Community Project

  • Post author:Linda Burke
  • Post published:January 8, 2023
  • Post category:Featured
  • Post comments:0 Comments

On February 28, 2023, the world will join together to raise awareness for rare diseases like atypical HUS. Recognized annually on…

Continue ReadingRare Disease Day 2023- aHUS Community Project
Read more about the article A ChatGPT about aHUS (and that Christmas question)

A ChatGPT about aHUS (and that Christmas question)

  • Post author:Len Woodward
  • Post published:December 22, 2022
  • Post category:Featured
  • Post comments:0 Comments

aHUS: Rare Blood Disorder This is a chat Global Action had with ChatGPT about aHUS. ChatGPT is a very new online…

Continue ReadingA ChatGPT about aHUS (and that Christmas question)
Read more about the article HST TMA Is It aHUS ?

HST TMA Is It aHUS ?

  • Post author:Len Woodward
  • Post published:December 14, 2022
  • Post category:Featured
  • Post comments:0 Comments

- An Hematopoietic Stem Cell Transplant (HSCT) is a way to treat some malignant and benign diseases. The transplant replaces disease…

Continue ReadingHST TMA Is It aHUS ?
Read more about the article Study of the aHUS Diagnosis Process- the “whys”, “whats” and “hows”

Study of the aHUS Diagnosis Process- the “whys”, “whats” and “hows”

  • Post author:Len Woodward
  • Post published:December 8, 2022
  • Post category:Featured/Uncategorized
  • Post comments:0 Comments

It is now over two years ago that Global Action began a major study of the aHUS Diagnosis Process, it is…

Continue ReadingStudy of the aHUS Diagnosis Process- the “whys”, “whats” and “hows”
Read more about the article aHUS adverse events reporting

aHUS adverse events reporting

  • Post author:Len Woodward
  • Post published:November 29, 2022
  • Post category:Uncategorized
  • Post comments:0 Comments

So adverse events are being reported. In USA over 4500 per year on average for eculizumab are reported to the FDA…

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Read more about the article aHUS adverse events and patient reported outcomes

aHUS adverse events and patient reported outcomes

  • Post author:Len Woodward
  • Post published:November 29, 2022
  • Post category:Uncategorized
  • Post comments:0 Comments

aHUS patients in clinical trials are monitored for adverse events and personal outcomes experience while on treatment. Adverse events have been…

Continue ReadingaHUS adverse events and patient reported outcomes
Read more about the article Kamal is an aHUS Super Hero

Kamal is an aHUS Super Hero

  • Post author:Len Woodward
  • Post published:November 27, 2022
  • Post category:Uncategorized
  • Post comments:0 Comments

Kamal Shah is a Director/Trustee of aHUS alliance Global Action. He first had aHUS over 25 years ago. It was triggered…

Continue ReadingKamal is an aHUS Super Hero
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