They are not related.

Absolutely Taylor! I am with you on the aspect of patient voice. Will review the points in the article. We were looking at it from purely a scientific perspective since there’s a lot of discrepancy in the literature that has affected patient care & research in the field.

For that reason, the proposal was not to remove the name aHUS altogether. I think the physicians, patients and pharma need to come together as a next step to make sure everyone’s interests are aligned without compromising scientific advancement.

However I also see how this can be from a pt’s perspective when they have been diagnosed with a certain disease and now unsure what to call it. Moreover, since the drugs are approved for “aHUS”, it has created some unrest.

With advancements in understanding of etiology & ongoing understanding of the role of complement in various TMAs, it is important to move to a more etiology based classification so that appropriate & timely t/t is available to those who need it and avoid unnecessary treatment in patients who don’t.

Similarly, aHUS was a term given to a disease when it was not HUS. So it describes what it is NOT rather than what it IS.

From a scientific standpoint yes absolutely it is a step in the right direction. This is similar to why C3G is not called MPGN anymore. We still struggle with the term FSGS because we don’t understand the etiology fully. We have called diseases by what is seen on the biopsy.

Wow!!

Missed the NephJC:(:(.
That’s a gorgeous mug!! Where did you get it?

Nice piece and fully agree!!