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Skin & Atypical HUS: Thrombotic Microangiopathy in aHUS

Skin involvement and thrombotic microangipathy: a consideration for atypical HUS patient care.

A month of ravulizumab use adverse events

The Food and Drugs Agency have a database of adverse events (AEs) reported for all the drugs in use. It is mainly reports from the USA but it is an…

Since You Asked: aHUS NOMENCLATURE

The topic of ‘changing the name of aHUS’ crops up regularly, so since people keep asking here are details which might help to greater clarity and understanding to this topic.…

Rare Disease Day 2026: Many Voices, One Global Movement

Rare Disease Day 2026: Many Voices, One Global Movement Since 2015, the aHUS Alliance Global Action team has been right there alongside patients and caregivers—creating resources, sharing knowledge, and putting…

Stopping aHUS Treatment Safely

It is over a decade ago now but I still recall vividly when, at the first meeting of what would become the aHUS alliance in 2013, the representative from Italy…

What’s New in aHUS Research: Summer 2025

The aHUS Alliance Global Action team remains strong advocates for those affected by the rare disease atypical HUS, and proudly partners with people and groups dedicated to shedding light on…

Choice of aHUS treatments

In making a choice aHUS patients’ preferences among treatments like eculizumab (and its biosimulars) , ravulizumab, crovalimab, and iptacopan it largely depend on factors such as dosing frequency, effectiveness, safety…

What’s New in aHUS Research: SEPT 2024 Edition

Every year since the first aHUS Awareness Day on 24 Sept 2015 we’ve attempted to shine a spotlight on atypical HUS research to help add more visibility to (and for)…

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