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aHUS Trial Watch 14

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…

Atypical HUS CAREGIVERS

Atypical HUS families emphasize and embody the ‘care’ portion of the word ‘caregiver’. Many of those caring for someone with atypical HUS are family members, filling a vital but unpaid…

TMA: the Need for a Multidisciplinary Team Approach

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…

Atypical HUS Research: What’s New OCT 2021

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 not quite eculizumab

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…

2021 FAQs – FACTS about Atypical HUS

aHUS Awareness Day 2021 - Answers to FAQs Finding information about any rare disease is challenging, and perhaps more so for an ultra rare disease such as atypical hemolytic uremic…

Withdrawal – need for a consensus

Article No. 457 Yet another article about the outcome of withdrawal of eculizumab treatment has appeared. It is not about a controlled trial of patients selected to test withdrawal of…

Spotlight on aHUS Research – July 2021

Atypical HUS Research – What’s New? The aHUS Alliance Global Action team has created a virtual ‘library’ of publications that are aHUS-specific and are categorized by topics such as diagnosis, treatment, genetics, thrombotic microangiopathy (TMA), complement, transplant, pregnancy, and more.