Real world data on aHUS treatment discontinuation
A few days ago an article appeared in The Lancet which claims to be the largest real world analysis of complement…
A chat about the Ravu-Pregnancy Registry
Recently I wrote an article about a clinical study which is an Ravulizumab pregnancy registry in the USA. Then tried to…
Discontinuation – no longer needing complement inhibition
Complement inhibition treatment discontinuation is a topic that Global Action has led on in the aHUS patient advocacy world for several…
Treatment Discontinuation- do doctors and patients think alike?
Recently a novel article about complement inhibitor treatment discontinuation was published. Novel because of the research method used to produce its…
Choice of aHUS treatments
In making a choice aHUS patients’ preferences among treatments like eculizumab (and its biosimulars) , ravulizumab, crovalimab, and iptacopan it largely…
Discontinuing complement inhibitor treatment
It is now just over 3 months since a discontinuing treatment decision making model was proposed to help aHUS patients make…
Medication Guide Eculizumab
Have you ever seen or read the medication guidance for using Eculizumab, or even Ravulizumab? There is one in every vial…
Stopping Treatment – aHUS Agenda Topic 7
Stopping aHUS treatment when no longer needed is a big decision for patients. Global Action put the patients research agenda question…
Side effects of ravulizimab between infusions
Ravulizumab is more widely used these days, particularly in the PNH community. Apart from the longer infusion intervals PNH patients benefit…