Break down in communication flows and fragmented outreach have built barriers for research and clinical trial enrollment regarding advancing new options for those with the rare disease atypical HUS (aHUS, or hemolytic uremic syndrome). The aHUS Alliance looks at current challenges, and potential pathways to explore and engage.
Kidney Week 2018 - aHUS Alliance overview of presentations that matter to the atypical HUS community. Links to ASN presentations and abstracts on topics such as complement, kidney transplant, pregnancy, eculizumab, thrombotic microangiopathy, HELLP, aHUS global registry, and more.
By May 2013, after nearly three months of campaigning by the “few” and getting the issue to the attention of the…
The Challenging Journey to bring Treatment those in the UK with Atypical HUS The Finest Hour of the Few: Part 11…
... The more you refuse to hear my voice (ooh-weh ooh-weh ooh-weh ooh-weh).... aHUS Advocacy in the UK - The Reluctant…
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.
Continuation of patient advocacy in the real world.... Then came the announcement and the “No decision” conversation. ( click here for…
The story of The Reluctant Advocate continues 14 June 2012 London – AGNSS Meeting to Evaluate Eculizumab for aHUS. This…
Another aHUS Awareness Day passes with an increase in participation by the aHUS community. At the time of writing the aHUS…