Rare Disease Day 2022: aHUS Alliance Global Action to mark the day with a patient-centered video that focuses on questions posed by those affected by the rare disease atypical HUS.
A trial has been designed by Alexion to examine the efficacy of Ravulizumab to treat those with a Thrombotic Microngiopathy , TMA, caused by a trigger. This somewhat vague scoping…
An overview of facts & issues for people living with the rare disease atypical HUS (aHUS or SHUa), one double sided page. This print-friendly document (PDF) was designed to share…
Take "diacylglycerol kinase " and add a "syndrome" throw in a letter from the Greek alphabet " ε" and you have the makings of the name of a rare disease-…
Can MedEd Encourage Specialists to Form TMA Teams? Tiny clots which form in the body’s small blood vessels - in brief, that’s how thrombotic microangiopathy can damage vital organs such…
We marked aHUS Awareness Day (24 Sept) with our own advocacy-based research, releasing the 1st report of data and insights from aHUS Alliance Global Action team on the 2021 global…
Ravulizumab is becoming a treatment of choice for aHUS in countries where access is funded. Though eculizumab will still have a part to play in aHUS treatment. So is Ravulizumab…
In Article 462 notice was given of a study to help USA rare disease patients in general. and aHUS patients in particular, by gathering information about their experience of gaining…