The finest hour of the few.
The Challenging Journey to bring Treatment those in the UK with Atypical HUS The Finest Hour of the Few: Part 11…
What do we need? When do we need it?
... The more you refuse to hear my voice (ooh-weh ooh-weh ooh-weh ooh-weh).... aHUS Advocacy in the UK - The Reluctant…
The higher you build your barriers
Continuation of patient advocacy in the real world.... Then came the announcement and the “No decision” conversation. ( click here for…
Don’t rain on our parade!
The story of The Reluctant Advocate continues 14 June 2012 London – AGNSS Meeting to Evaluate Eculizumab for aHUS. This…
aHUS who cares?
Another aHUS Awareness Day passes with an increase in participation by the aHUS community. At the time of writing the aHUS…
aHUS Awareness Day 2018 – The Video
Once again, with the help of aHUS Patients and their families, the aHUS alliance has produced a video to spread the…
Atypical HUS Fact Sheets – Sept 2018 Editions
Atypical HUS Fact Sheets (released Sept 2018) provide aHUS -specific research and info about the rare disease atypical Hemolytic Uremic Syndrome or aHUS. Available in 2 formats: an 'In Brief' print friendly pdf, and a full length version (17 page) with links to current atypical HUS research (with citations) and key topics of interest to physicians, aHUS patients, and their families.
aHUS Registry Update
In an update about the aHUS Registry earlier this year the alliance reported that Alexion had cut back its investment in…
Now where is my tutu?
(* Part 1 and Part 2 click here) Now where is my tutu? With the family moto “Non Offeres” ( “Never…
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