Raising aHUS awareness is built into the DNA of the aHUS alliance and has been from its outset and also for the aHUS alliance Global Action. Promoting awareness of aHUS is in our stated mission.
It is what we do.
Why?
Because aHUS patients have told us their vision in an awareness day video that:
First of all it was about instigating “aHUS Awareness Day”. A generic badge which anyone, anywhere, can use to make more people aware of aHUS. That began in 2015 and it has been going on every 24 September since.
An aHUS awareness day video was introduced with a different theme each year. This year one suggested by a Chinese patient advocate about best aHUS decision made.
Another way is collaborate with clinicians on articles which put in the public domain. Two examples from several are:
- Woodward, L., Johnson, S., Walle, J.V. et al. An innovative and collaborative partnership between patients with rare disease and industry-supported registries: the Global aHUS Registry. Orphanet J Rare Dis 11, 154 (2016). https://doi.org/10.1186/s13023-016-0537-5
- Burke, L., Sethi, S.K., Boyer, O. et al. Voice of a caregiver: call for action for multidisciplinary teams in the care for children with atypical hemolytic uremic syndrome. Pediatr Nephrol 39, 1961–1963 (2024). https://doi.org/10.1007/s00467-023-06158-8
Between them they have raised almost 7500 views and 31 citations by other researchers.
Awareness was also raised by starting the only public global aHUS patient website www.ahusallianceaction.org which began in 2016. Over 750 original articles have been written about aHUS from a “360 degree” perspective. Some read by thousands.
AI apps are also citing aHUS alliance Global Action articles in responses to questions about aHUS.
And as well, although it is the main platform for aHUS Awareness Day, the website has promoted aHUS awareness to different people in different ways continuously since May 2016.
Recently on this platform an idea for a pan organisation concept for a Global aHUS Town was initiated to show how connected is the reach of aHUS to the tens of thousands of surviving aHUS patients who make up the Global aHUS Town.
On launch there was only awareness of aHUS patients in 59 of 235 countries in the world.
That has risen by 4 since. So still many more for the aHUS community to discover.
But connected reach works both ways and whilst aHUS patients may not be known to us, more may know about us and visited various aHUS patient platforms .
This site has had viewers from 188 countries.
It is unlikely that all these viewers from these countries were patients, in each visit awareness of aHUS was momentarily raised in those viewers.
Which countries have had no viewers?
Mostly small African countries with small populations and some Caribbean and Pacific islands. So come on you guys.
Among them Tuvalu the first country to welcome in each aHUS awareness day!
Notably too are Afghanistan, Cuba and North Korea. Maybe aHUS citizens are not allowed to try to contact a western website.
But most notable of all, the smallest country in the world The Vatican has not visited
So hopefully this year the Pope might become aHUS aware on 24 September with a visit to this site.
Article No 754
Do something to raise aHUS awareness on aHUS Awareness Day on 24 September.
