What is atypical HUS? How is aHUS diagnosed and treated? Providing a quick start to begin learning about the rare disease atypical hemolytic uremic syndrome, Atypical HUS 1.0 offers a list of key assets as your initial set of aHUS resources & info.
Len Woodward was a founding Trustee of aHUSUK and a founding affiliate of the aHUS Alliance. He is also a Director Trustee of aHUS Alliance Global Action. In this series…
This version of the aHUS alliance website has been running for nearly 2 years ( there was a temporary one which preceded it to host the 2016 aHUS Global Poll).…
Twenty years ago today, in 1998, an article appeared in Kidney International , the Journal of the International Society of Nephrology , which would be of enormous significance to those…
People living with the rare disease atypical hemolytic uremic syndrome (atypical HUS or aHUS) face many challenges, including the difficulty in speaking with their healthcare professionals about symptoms…
Rare Disease Day 2018 had the theme of research. As its contribution to Rare Disease awareness this year , the aHUS alliance facilitated an aHUS awareness video ,which in its…
What does the term ‘rare disease advocacy’ mean to you? Patients and caregivers speaking up on social media or at various meetings, addressing needs for a particular rare…
Adding value in patient advocacy is obvious. Or is it? Those involved in patient advocacy constantly ask themselves “Am I achieving anything?” . They know they are doing things, but…