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Greetings from the sky RDG Readers and aHUS community -

I’m writing this from an airplane. It’s been a busy month, last week we were in the Midwest and today I’m headed to Atlanta to be a part of the IgAN Conference. I’m so excited to be invited to speak with a “cousin” kidney disease of aHUS.

But during this time of being tied to a seat with some wifi, a cup of soda, and a heap of feelings from missing Zach and July - I wanted to talk for a minute about an exciting project from the aHUS Alliance… a poll about the name change.

I fear most patients don’t know a name change is in the discussion… but in truth, the name has been under scrutiny for a long time.

I wrote an article about the name change and the challenge around it in STAT’s First Person… and not much progress has happened since, until now:

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Every year the aHUS Alliance creates a project to coincide with the Awareness Day approaching in September.

This year the project is an opportunity for folks to raise their voices regarding the name change.

I’ve written about this already - raising questions about the working group as well as the lack of patient inclusion… and emails unanswered.

Functionally, I believe an informed patient community is a powerful resource for a name-change that more accurately labels the disease.

I think of the strong example of Polycystic Ovary Syndrome (PCOS) now officially renamed to Polyendocrine Metabolic Ovarian Syndrome (PMOS). The PCOS patient community was very much involved in their migration to the more accurate name PMOS and the new name will help the millions of women with this endocrine disruption get better care.

About 40 years ago, discussion emerged about how atypical HUS was a broadly ineffective name. Folks in the medical community suggested a change saying the name only tells us what the disease IS NOT - instead of what it in fact IS.

Additionally while hemolysis and kidney injury are common, some aHUS patient don’t display those symptoms. These patients are a small minority, but they exist. Thus they don’t feature the HUS part of the atypical HUS.

I wrote about this previously and in STAT but the National Kidney Foundation had a working group that essentially suggested a very sprawling fluid acronym system for the new name. I put their chart in this article about the naming.

I would be Pregnancy-Induced Complement-Mediated No Known Gene - Thrombotic Microangiopathy.

Kinda a rough one in actual application.

I also find doubling down on TMA possibly problematic and confusing. Lots of diseases feature TMA. Pregnancy induced-TMA could potentially complicate high-stakes situations like mine when there are multiple kinds of pregnancy TMAs already including HELLP Syndrome, thrombotic thrombocytopenic purpura (TTP), pregnancy-induced hypertension (PIH), and preeclampsia (PE).

To be fair, the disease is ultra-complex and rarely are two patients exactly the same in how the disease manifests.

The Working Group used something called the Delphi Method developed in 1944. It’s great at building systems, policy-making and forecasting, but I’m not so sure it’s a good method for coming up with a name.

It’s a system for convergence, not creativity.

When a few of us from the patient community requested a listening group - we were essentially ignored.

I suppose not enough funding for a zoom call. Yes, you tasted bitterness in that last sentence.

So the smart folks at the aHUS Alliance are using this year’s aHUS Awareness Day video to let doctors and researchers know how we feel about changing our name. If you’d like to have your voice heard on your feelings about a name change, and you’d like to help them make a difference in making sure we are included in any decision I encourage you to answer their call. Details below…

I agree a new name could help save lives and increase awareness… but I am also undecided purely based on how clunky the process is so far.

If we are going to fund these efforts, let’s do it right.

The process should also not solely be clinicians but I suggest including creatives and patient/carer perspectives.

Names take creativity - so I suggest not just keeping it to a room of doctors. Open up the process, collaborate, and let’s see what could be discovered.

I’m not sure this Delphi Method worked here. Disease naming is a qualitative, high-stakes, culturally sensitive creative task - exactly the kind of problem where consensus-forcing methods can produce something tone-deaf or uninspired.

So with a better system, astute project management, funding, and community involvement - I think a new name is possible.

I’m not attached to aHUS. I think creatively perhaps we can be inspired by the PCOS to PMOS transition. They feel in the same orbit. So, maybe we can come up with something that feels connected to the aHUS nomenclature foundation… but solves problems this current name can’t.

Send in the following to jeff@ahusallianceaction.org and we will make a slide to be included in the video/slideshow that will premier on September 24, 2026.

To participate, send:

- Your Name

- 1 photo

- Where you are from

- Your vote: Chose 1, 2, 3, or 4 from these choices:

(1) I AGREE to a name change

(2) I DISAGREE with a name change

(3) I AGREE to a name change but keeping the letters “aHUS” as part of the name (example – aHUS/cTMA)

(4) UNDECIDED

- a brief statement of why you made your choice (no more than 60 words)

To make this project more effective, please start sending in your submissions now so we can post slides continuously from now up until aHUS Awareness Day. This will help raise awareness among our global aHUS family (most are unaware of the name change). And then the video will show the collection of all slides.

Len Woodward wrote an article to help inform folks further.

What do you think of the name and all this situation? Are you in the aHUS community and planning to answer the poll?

Your supportive comments help fuel this work too. Thank you all so much!

Crickets on the aHUS Name Change Front... until now

DID YOU MISS IT?

I Don’t Know What My Disease’s Name is Anymore

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