What about aHUS?

A few weeks ago saw an anniversary of the launch of this website. Not a big deal really.  Just over four years ago a small group of aHUS patients and family members worked together to create a new website about aHUS.

Of course there  had been other aHUS  patient websites before; and ,indeed, there had even  been a limited functioning aHUS alliance website. The aHUS alliance Global Action website however aimed to be global in its information for, and in its connection with, the global aHUS community. Only the original USA‘s Foundation for children with aHUS site in the early days of online patient advocacy had tried to do that. This time, however, the organisation behind it, the aHUS alliance Global Action had a multi national base.

It is one thing aiming to do something and another achieving a connection with a global aHUS community because  there are many barriers to overcome before that happens.

Although it started off quietly, this website had the initial advantage of announcing the results of a Global aHUS Poll in 2016. This  attracted some early attention along with a handful of  blog articles about diverse aHUS topics , which have been a feature of the website ever since. There are now nearly 350 such articles on various  aHUS topics and in a variety of languages to keep it topical, global  and up to date. No other aHUS website attempts that.

It is still very much  an “active” website, whilst the trend for many is to be static, moribund and out of date.

 It is very important for websites to have regular viewers who remain loyal and “drop in” occasionally. It is also vital to create a growing awareness so that potential viewers discover it during their internet searches on aHUS topics. For that to be effective, website content needs to appear in the search results of search engines such as Google.

In their early days it is not unusual for websites  to be listed in the 10th page or more of search engine results, if at all. It is unlikely that a searcher is going to get that far in looking for interesting websites. Page 1 or Page 2 maybe, but not often any further.

If an organisation cannot afford to pay for advertising to get a high position, then it will take time for it to  build up visibility. Much reliance is put on “links to and from” other related websites, or social media, including “shares” and “retweets” by approving influential viewers.

To gain that approval the content has to be good quality, relevant and worthwhile reading. Bit by bit visibility builds.

On 6 June 2020 Global Action tested out how its website content fared in searches using “aHUS” PLUS another related topic e.g. “aHUS Pregnancy”. 25 aHUS related topics words were gathered and a search undertaken on Google for each of them. The  results for each search are listed below including the Global action website page which was  found  and its position in the Google search engine results displayed. Whilst doing so a note was made of any other patient organisation website appearing above Global Action result.

Search engine results in alphabetical order:-

Search term Google search result position Article appearing Other aHUS patient website above
Awareness 1&2 https://www.ahusallianceaction.org/ahus-awareness-day-some-images-from-the-alliance/ No
Complement 27 https://www.ahusallianceaction.org/a-cure-for-ahus/ No
COVID 19 1&2 https://www.ahusallianceaction.org/ahus-and-covid-19/ No
Cure 2 As for Complement No
Diagnosis 17 https://www.ahusallianceaction.org/atypical-hus-1-0/ No
Eculizumab 24 https://www.ahusallianceaction.org/generiums-elizaria-first-biosimilar-to-eculizumab/ No
ERKNet 5&6 https://www.ahusallianceaction.org/erknet-and-ahus/ No
Expert Centre 1&2 https://www.ahusallianceaction.org/ahus-expert-centres-what-are-they/ No
Fatigue 2&3 https://www.ahusallianceaction.org/ahus-fatigue-it-matters-to-ahus-patients/ No
Genetic testing 18 https://www.ahusallianceaction.org/genetic-tests-know-not/ No
HUS 6&7 https://www.ahusallianceaction.org/ahus-perhaps-ttp-stec-hus-another-tma/ No
Idiopathic 10 https://www.ahusallianceaction.org/ahus-is-its-end-really-nigh-2/ No
Information 7 https://www.ahusallianceaction.org/wp-content/uploads/2016/08/2016-aHUS-pdf-Key-Facts-Information-1.pdf No
Patient advocacy 1&2 https://www.ahusallianceaction.org/global-patient-advocacy-ahus-row-2/ No
Pregnancy 4 https://www.ahusallianceaction.org/good-news-pregnancy-and-ahus/ No
Prevalence 6&7 https://www.ahusallianceaction.org/just-many-ahus-patients/ No
Ravulizumab 7&8 https://www.ahusallianceaction.org/5120-2/ No
Registry 1 https://www.ahusallianceaction.org/global-ahus-registry/ No
Remission 1 https://www.ahusallianceaction.org/remission-from-ahus/ No
Research 2&3 https://www.ahusallianceaction.org/atypical-hus-find-ahus-research/ No
Symptoms 11&12 https://www.ahusallianceaction.org/atypical-hus-symptoms-can-perplexing/ aHUS Canada(8)
TMA 2 https://www.ahusallianceaction.org/ahus-tma-study-centers/ No
Trials 4&5 https://www.ahusallianceaction.org/ahus-trials-watch-2/ No
Transplant 9 https://www.ahusallianceaction.org/answering-the-transplant-question/ No


In only 2/25 searches did a Global Action fall outside of the first two pages of search results i.e 21st or higher. Those were   for “aHUS Complement” and “aHUS eculizumab”. The latter may be understandable because eculizumab has been around for a while and there are many well established clinical articles about it. In contrast Ravulizumab was being developed and tested during the period that Global Action was reporting about it and so two of those articles featured in the first page of results. Global Action was the first to announce the FDA decision about Ravulizumab for aHUS in October last year.

Not having a Complement article higher in the search list at present is disappointing as it is a topic that Global Action frequently writes about and has been focused on.

In only 1/25  searches did another aHUS patient group website article appear above the alliance’s result , i.e. “aHUS Triggers” and that was by aHUS Canada.

19/25 global action articles were listed in the first page of results. Quite an achievement when there is considerable aHUS content on the internet from well established clinical journals, Pharma and highly funded organisations

For  6/25 searches a Global Action article  appeared as the top result including “aHUS Expert Centres, Awareness , Registry, COVID 19, Patient Advocacy , Remission”. For  4/6 of those results a Global Action article was in second place too.

Overall these results reflect the success that the website has achieved over its  four years. Global Action recognises that the results may change as they are frequently influenced by Google search engine algorythms  which can alter at the drop of a hat.

Whilst it is unlikely that a website can be sustained in the long term if no one is interested in what it offers,  with just four years experience the Global Action website has aHUS  content that is   diverse  global and forward looking which has been viewed.

There are maybe only 20,000 aHUS patients around the  world. The vast majority of them  will not have found this website yet.  Our content is there for them, and their families, if and when they connect.

Past and present website users are making that possible by helping the aHUS Global Action site become more visible in the internet.  In  doing so they create more aHUS  awareness around the world.  Every  click on an aHUS Global Action article helps.

Raising aHUS priority and asking “what about aHUS?”