Keeping track of medical advancements in the rare disease space is challenging, but for those interested in atypical HUS the aHUS Alliance Global Action team 'rounds up' new publications every…
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…