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.
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…
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…
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 (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.