Atypical HUS Research: Feb 2025 Roundup
Since its inception in 2008, and celebrated annually on the last day of February, world Rare Disease Day has been an…
RDD25: MORE THAN YOU CAN IMAGINE!
It will be Rare Disease Day on 28th February 2025. A day to raise awareness of rare diseases generally and also…
Trial Watch 20- ClinicalTrials.eu
The Global Action series “Trial Watch” has in the past covered several trials of treatments for aHUS patients and even some…
What’s New in aHUS Research – June 2024
As sometimes happens in life, things can arise as a group that makes people take a bit more notice than if…
The KDIGO “aHUS” Guidelines have arrived
The long anticipated KDIGO Guidelines from the Controversies Conference held in Florence in September 2022 are now published. The report can…
aHUS as a rare disease 10 years ago
10 years ago global information about aHUS patients was more or less non existent. Vey sparse at best. An aHUS alliance…
Research into aHUS – an interview with a researcher
Last year Global Action brought attention to a research article ( Closing the CaHUS knowledge gap ) which stood out as…
Review of the research that matters to aHUS patients (Part 2)
When this review of the aHUS patients research agenda began, the question was asked "is a patient research agenda worth while?".…
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