When conceived it was known from previous experiences that having a global poll about aHUS was going to be a major undertaking.
The poll went ahead in the summer of 2024 and got a massive response from aHUS patients/carers in more countries than ever before.
Once responses were in it took months into early summer 2025 to prepare, graph and begin analysis of the results and their comparison with those from 2014.
The authors for different reasons then had to pause their work.
Picking it up again later in 2025 the writing of an article began. Draft after draft, amendment after amendment. A discussion going back and fore with better versions emerging.
What struck the authors was the uniqueness of this global aHUS community’s effort to describe its experience of living with the rare disease aHUS using polls about “then and now”. Not many patient communities have or take the chance to do that.
There is now a draft which can go into the next stage of the Project . That is to get it published in a reputable journal. The step has now been taken.
It will take some weeks but with the genuine hope that by the end of the summer the results will be published.
Article No. 799
