The aHUS alliance Global Action conducted a survey in 2014 to provide an the opportunity for adult patients and aHUS family caregivers around the world to share their experiences and insights into living with the rare disease atypical hemolytic uremic syndrome. Then, over 214 aHUS patients from 17 countries gave their voices which collectively changed the understanding of the disease which affected so few globally.

In 2014 people affected by atypical HUS had begun to connect via social media, and advocacy reach expanded with an increase nation-specific aHUS advocacy groups. Now a decade later, we’re chosen 2024 as the time to seek insights once more from the voices of people living with aHUS today.

Ten years later have matters progressed for aHUS patients everywhere, or just on some fronts, in some places? What would today’s global aHUS community have to say about their patient experiences? What differences and insights might be revealed in a comparison of the 2014 poll responses and those in 2024?

As an active project, please check back for articles and assets regarding the current status for the 2024 aHUS global survey.

Vision for a 2024 aHUS Global Survey – On the needs & value of looking at the experiences of aHUS patients & caregivers ’10 Years On’ from our 2014 poll.

aHUS as a Rare Disease 10 years Ago – A Look Back

2014, 2016, and 2020-2021 aHUS Global Polls – Landing Page for PRIOR SURVEYS & RESULTS