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…
Good will come together?
Some key issues exist for atypical HUS patient groups regardless of national borders, which launched the aHUS Alliance on 2013 Rare Disease Day, 28 February. How momentum among nations impacted aHUSUK recognition that atypical HUS advocacy collaboration brings new focus: good will come together.
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.
ERKNET: aHUS and transplants
ERKNET’s website hosts a programme of webinars ( live talks over the internet) about Rare Renal Diseases . The talk today…
Atypical HUS & School
Atypical HUS and School: Information about teaching & learning. Learners of any age may be affected by chronic illness or a rare disease like aHUS. What schools and employers should know about people living with atypical hemolytic uremic syndrome (aHUS)
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