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…
aHUS is a rare disease and rare disease patients are said to suffer from lack of awareness of their disease and…
A frequent discussion on aHUS social media platforms is about "probabilities" and "percentages". The probabilities of someone inheriting an aHUS predisposing…
Global Action has more than any other organisation promoted the research registries that exist for our rare disease. Many rare diseases…
For the past nine years Global Action has been at the forefront of featuring the aHUS name change journey. Currently proposals…
A few days ago an article appeared in The Lancet which claims to be the largest real world analysis of complement…
The Primary aHUS community now understands that there is no accurate record of how many "aHUS" patients there are , but…
aHUS patients have been deliberately not engaged in the proposal to change the name aHUS into a plethora of thrombotic microangiopathy…
Recently I wrote an article about a clinical study which is an Ravulizumab pregnancy registry in the USA. Then tried to…
What follows is an imagined "dinner party conversation" about atypical hemolytic uremic syndrome (aHUS) among aHUS pioneers—Professor Conrad von Gasser, Professor…