New name plans what the aHUS community think about them

It is aHUS Awareness Day (it started in Tuvalu first!) . The theme for this Awareness Day is the plan for a new name for aHUS.

Raising awareness about it has been continuous for nearly three months.

As part of that the global community was asked to say what they thought of the plans and to vote

–for

-or against

-or conditionally for.

-or even that they are for one reason or another just undecided.

Their vote could appear on an aHUS Day Video produced once more by Jeff Schmidt ( to see the video click HERE), It is a relaxing and informative 7 minute watch and a central aHUS awareness day event..

But if the video was not for them they could vote personally by e mail or Facebook DM or comment to Global Action.

The opportunity to have a say reached thousands in that time through awareness raising on the aHUS social media posts and Global Action website.

Here are the results. 63 voted and the table below shows how they voted.

Figure 1 – Votes by option and pathway used.

	FOR	AGAINST	CONDITIONAL (*)	UNDECIDED	TOTAL
Video	1	11	22	5	39
Email	–	9	10	5	24
Total	1	20	32	10	63

*the condition being that aHUS should feature somehow in the new name

So that is the aHUS community’s response.

-One is unequivocally for a change,

-Twenty are against

–Thirty two are for but want a compromise.

–Ten were undecided, of which two were for but had concerns about how it would be brought in.

The message from this group is that patients are not fully against some name change but are not for losing the name aHUS entirely.

Here is a list of reasons given for their view. These have been derived from the key words used in voters statements. The individual statements may differ but the core message could be a shared one.

Figure 2. Votes by option and reason for choice.

Reason	For	Against	Conditional	Undecided	Total	%
1.Could confuse doctors more than they are already and misdiagnose.		2	4	2	8	13
2. Do not know enough of what is planned.				3	3	5
3. Concern about current patient platforms becoming invisible to new patients.		2	3		5	8
4. Risk of losing entitlement to complement treatment ( e.g. insurance)		2	7	1	10	16
5.Loss or no confidence in managing the major change proposed				2	2	3
6, Worry that division will risk access to research funds		1			1	2
7. Evolve but preserve aHUS continuity for awareness and care access,		2	9		11	17
8. Diverse names could break existing community cohesion.			1		1	2
9.Name loss will cause confusion for those with idiopathic aHUS.			1		1	2
10. Loss of current name which is familiar.		9	6		15	23
11 Is science advanced enough to make accurate categorisations ( secondaries).			1		1	2
12. Wrong priority should focus on speeding up diagnosis.		1			1	2
13. Needed for tailored care.	1				1	2
14. Can create greater clarity for patients .				1	1	2
15. No reason given	0	1		1	2	3
Total	1	20	32	10	63

These reasons can be further categorised into a threats and opportunities analysis for the name change project as perceived by patients and their families.

Figure 3 Patient perceived threats and opportunities from name change.

Threat from:	No.
A.  Concern about the  capability of front line doctors to fully understand the change	8
B. Loss of a familiar name	26
C Loss or division of a visible patient community	6
D Concern about ability to manage a project of this scale	5
E. Risks to patient management	12
F. Loss of research funds	1
G. Tackling wrong priority	1
Total	59

OPPORTUNITY FROM:

H	TAILORED CARE	1
I	GREATER CLARITY	1
	TOTAL	2

2 no reason given

This report is the first attempt to gain feedback from patients and families on the renaming of their disease.

The small response from a potential global disease population of 27 to 30 thousand

There were 400 views of the launch article- a yield of 16%. There was a potential reach to 3000 . So the many non-participants could be seen as unconcerned by, not interested in or indifferent to whether the name is changed or not.

But of those reached and participating most viewed name change as a threat to them in one way or another with few having unequivocal support

There are by now possibly 30.000 aHUS patients in the world most of whom through no fault of patient advocates will not have been reached or maybe did not want to be reached.

They could in years to come be surprised one day when they visit their doctor and find their disease name has changed.

There may even be a further 30,000 new aHUS patients onsetting in the time it will take to fully change the name who will be told increasingly that they have cTMA. The name taking hold unofficially as aHUS once did.

Advocates now and to come as they move from early to middle 21st century will have their work cut out to deal with all that.

So a composite name like cTMA(aHUS) or aHUS (cTMA) will need to be settled upon lest chaos will ensue.

Better still experts could come together to decide on an “official” name for the transition. Combining old and new for the name approving organisation The World Health Organisation, WHO. As it would likely want to see dual naming in any transition . Maybe for patients advocates –

could be adopted as an identifiable compromise to use.

This Awareness Day has been an opportunity to raise awareness of name change, and to learn in the process for both patients and their advocates.(It has certainly made the author think a lot!).

There is also a considerable legacy of videos and articles for others to catch up with but also to frame an aHUS advocacy consensus and message for coming years.

After all, doctors will do what they want to do with names and are doing it already and we can do what we want to do. Can’t we?

But on aHUS Day 2026 the community owes a debt of gratitude and thanks to those who made the effort to give their opinion.

Another aHUS Awareness Day will pass.

The question now is when will be the first cTMA Awareness Day.

Maybe we have just had it.

Article No. 825