When it comes to knowledge of rare diseases patients are frequently critical of the level of knowledge of their treating clinicians.
What is more clinicians are very likely to agree with them.
Think about it, there could be 10 million or so medically qualified practitioners at any time and each year only around 4000 aHUS cases among millions of rare disease onsets. Expecting all to know all about all of them is wishful thinking .
Narrowing it down to key specialist nephrologists, haematologists and paediatricians globally there could still be 300,000 to 700,000 thousands of professionals at any time. Say half a million.
With the current professions there could be doctors about to finish their careers who have gone through training in the 1980s and possibly about 40% of the total had medical training before the millennium, when there was little aHUS knowledge about, and certainly no effective treatment.
Some may have learned about it in post qualifying educations from their institutes, or subscribing to clinical journals or attending conferences,.
Those undertaking training today are very unlikely still to have much lecture time on TMAs let alone hear mention of aHUS. There are many thousands of medical training syllabuses ( syllabi) devised by a multitude of medical training organisations and boards. The chances of understanding the nuances of all TMAs are slim. TTP and HUS maybe.
It is within this reality that those specialists who want to change the name of a disease need to implement that change
What could possibly go wrong?
Conversely those proposing a name change could see this as an opportunity to raise the profile of aHUS and TMAs by swamping all the institutes and multiple education syllabuses with information and guidelines about TMAs like never before so that there is more expertise around,
Of course there will resistance among the hundreds of thousands who will also be facing other concurrent priorities and the clamouring from other diseases for attention too.
And there at are least another 11 professions which could be involved in the diagnosis and management of just the complement version of TMA.
There will need to be many hundreds of conferences and training sessions. No mean task and that is before patient briefings begin. Around 27000 of them will need at least an hour to be told the new name and its implications for them.
New times new ways. Medical training is not what it was in the 1980s there is much more online resource and with AI technology new ways of disseminating knowledge in a sustained methodical way to make it easier on the recipient. Those implementing name change need to think outside the box and embed and deploy AI to make that happen.
Starting with those doctors who already have aHUS patients. Under guidance they will be the last link in the chain to officially* recategorise and brief the aHUS patient and determine their revised diagnosis and specific treatment and prognosis which applies to that revised diagnosis. To do that they must know exactly what they are doing.
That would be the critical moment for current aHUS patient and they need to be confident that it is done correctly and does no harm to them.
Simultaneously new patients will need to be correctly categorised in the new diagnosis process with no additional delay , and indeed sooner if this improvement of name is going to be beneficial to future patients. Difficult to imagine right now that there would need be solutions for it country by country or internationally.
So that important pivotal moment looks threatening to existing aHUS patients right now and that must be recognised and addressed. A Statement of no change until all is ready or what is going to happen in the meantime until there is readiness. There needs to be a published article or letters to clinical publications not the current hiatus.
aHUS awareness day 2026 is about awareness of a name change for aHUS. Patients, parents or family members have a chance to have they say in favour or not of a change and why. Go to this website page to see how your voice can be added. aHUS Awareness Day 2026 Call Out
*This is where the official names will have to be before it can be done:
Article No. 808
