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Read more about the article AHUS patients met with FDA and this is what they said

AHUS patients met with FDA and this is what they said

  • Post author:Len Woodward
  • Post published:January 10, 2024
  • Post category:News
  • Post comments:0 Comments

In September last year a group of aHUS patients and parent/carers met with FDA and told them about aHUS. A summary…

Continue ReadingAHUS patients met with FDA and this is what they said
Read more about the article aHUS Trials Watch 19- Iptacopan

aHUS Trials Watch 19- Iptacopan

  • Post author:Len Woodward
  • Post published:December 7, 2023
  • Post category:News
  • Post comments:0 Comments

FDA has approved the use of Iptacopan, brand name Fabhalta, for PNH. Two trials demonstrated that this Factor B complement inhibitor…

Continue ReadingaHUS Trials Watch 19- Iptacopan
Read more about the article Affordable Treatment – aHUS Agenda Topic 5

Affordable Treatment – aHUS Agenda Topic 5

  • Post author:Len Woodward
  • Post published:December 3, 2023
  • Post category:News
  • Post comments:0 Comments

Affordable treatment is a big issue for the majority of the world’s aHUS patients. Many live in countries that cannot afford…

Continue ReadingAffordable Treatment – aHUS Agenda Topic 5
Read more about the article aHUS Trial Watch 18 – subcutaneous Ravulizumab

aHUS Trial Watch 18 – subcutaneous Ravulizumab

  • Post author:Len Woodward
  • Post published:December 1, 2023
  • Post category:News
  • Post comments:0 Comments

To the best of Global Action’s knowledge there has not been a trial of subcutaneous Ravulizumab for use in the treatment…

Continue ReadingaHUS Trial Watch 18 – subcutaneous Ravulizumab
Read more about the article aHUS – Stopping eculizumab treatment safely

aHUS – Stopping eculizumab treatment safely

  • Post author:Len Woodward
  • Post published:November 1, 2023
  • Post category:News
  • Post comments:0 Comments

For aHUS patients stopping eculizumab (or even Ravulizumab) treatment is an important but emotive issue. Having had the treatment when seriously…

Continue ReadingaHUS – Stopping eculizumab treatment safely
Read more about the article Algorithms: Steps to Diagnose aHUS & other TMAs

Algorithms: Steps to Diagnose aHUS & other TMAs

  • Post author:Linda Burke
  • Post published:October 25, 2023
  • Post category:News
  • Post comments:0 Comments

Algorithms to diagnose aHUS apart from other syndromes of TMA exist, but why do these tools with problem solving steps seem under-utilized?

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Read more about the article Closing the CaHUS knowledge gap

Closing the CaHUS knowledge gap

  • Post author:Len Woodward
  • Post published:October 21, 2023
  • Post category:News
  • Post comments:0 Comments

Two days ago an article appeared in BLOOD journal which was the result of a comprehensive analysis of data about patients…

Continue ReadingClosing the CaHUS knowledge gap
Read more about the article Immunocompromisation- is it aHUS?

Immunocompromisation- is it aHUS?

  • Post author:Len Woodward
  • Post published:October 20, 2023
  • Post category:News
  • Post comments:0 Comments

Immunocompromisation is a hall mark of aHUS. For those who are predisposed to it and for those who have had it…

Continue ReadingImmunocompromisation- is it aHUS?
Read more about the article Complement inhibitor users it’s World Meningitis Day

Complement inhibitor users it’s World Meningitis Day

  • Post author:Len Woodward
  • Post published:October 5, 2023
  • Post category:News
  • Post comments:0 Comments

It is important that those using complement inhibitors remain alert to meningococcal infection a life threatening side effect of their use.…

Continue ReadingComplement inhibitor users it’s World Meningitis Day
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