Work began on the global poll of aHUS patients experiences of living with aHUS in early Autumn 2024.
The Poll has produced a much bigger data set than the vast majority of published articles on the subject of aHUS , It not unusual for an article to take two or more years to get published.
And that is by people who know how to do it and have experience of writing and do all that is needed for a submission to a journal.
The final draft which has been drafted and restructured and redrafted again is now written and formatted.
It has 27 tables of data gleaned from patients and/or their families responses to two online surveys.
The most comprehensive and indeed unique report of aHUS patients experience so far.
Finally it has been submitted to the Orphanet Journal of Rare Diseases to be considered for publication.
Its title “A comparative study on living with atypical haemolytic uraemic syndrome: Was patient experience better in 2024 than in 2014?”
So a few more hurdles to be jumped , including peer review, before it will appear in public if accepted.
This study about aHUS people by aHUS people using funds donated by aHUS people for it to be free to read by aHUS people and others is unique.
The wait begins. Will it, wont it be accepted?
Article No 832
