What is it like from an aHUS patients' perspective to decide to withdraw from complement inhibitor treatment? Much is published about stopping complement inhibitor treatment but not from a patients…
It is said that thrombomodulin, or TM (AKA THBD) ,or CD141, plays only an indirect part in TMA (thrombotic microangiopathy) . TM is something which is ubiquitously spread on the…
A PDA or patient decision aid is becoming an important part of the increasing shared decision making by patients and doctors. How do patients prepare themselves for a discussion on…
A few days ago an article appeared in The Lancet which claims to be the largest real world analysis of complement inhibitor treatment of aHUS patients. It is a retrospective…
Recently I wrote an article about a clinical study which is an Ravulizumab pregnancy registry in the USA. Then tried to imagine what a topic like that would look like…
Complement inhibition treatment discontinuation is a topic that Global Action has led on in the aHUS patient advocacy world for several years. More than anyone else our website has provided…
It’s been a busy 4th quarter to round out 2024 for our aHUS Alliance Global Action team, and we’d like to share a few highlights from recent publications which have…
Recently a novel article about complement inhibitor treatment discontinuation was published. Novel because of the research method used to produce its results. A qualitative study based on interviews with ten…