Percentages and probabilities -AHUS AND MATH(S)
A frequent discussion on aHUS social media platforms is about "probabilities" and "percentages". The probabilities of someone inheriting an aHUS predisposing…
Is there a PDA for aHUS treatment continuation?
A PDA or patient decision aid is becoming an important part of the increasing shared decision making by patients and doctors.…
Registries for the rare disease aHUS
Global Action has more than any other organisation promoted the research registries that exist for our rare disease. Many rare diseases…
Pregnancy exposure impact : Eculizumab and Ravulizumab
Recently information about the Ravulizumab Pregnancy Registry was featured on this site. Ever since Ravulizumab was approved the issue of its…
A patients perspective of aHUS name change
For the past nine years Global Action has been at the forefront of featuring the aHUS name change journey. Currently proposals…
Global Poll for aHUS – Progress Report
Last Summer nearly three hundred aHUS people from around the world participated in the 2024 Global Poll. They filled in a…
Real world data on aHUS treatment discontinuation
A few days ago an article appeared in The Lancet which claims to be the largest real world analysis of complement…
Primary aHUS renaming progress
The renaming of Primary aHUS is inevitable. The experts have said so and the name change creep, albeit unofficial, is gathering…
TMAs -How many are there?
The Primary aHUS community now understands that there is no accurate record of how many "aHUS" patients there are , but…
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