E-sources for aHUS information and support
aHUS is a rare disease and rare disease patients are said to suffer from lack of awareness of their disease and…
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…
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…
aHUS Nomenclature: Bridges to the Future
Scientific advancements in the last decade have yielded promising avenues on multiple fronts, including those related to atypical HUS and other…
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…
Patients from around the world discuss aHUS name change
aHUS patients have been deliberately not engaged in the proposal to change the name aHUS into a plethora of thrombotic microangiopathy…
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