This version of the aHUS alliance website has been running for nearly 2 years ( there was a temporary one which preceded it to host the 2016 aHUS Global Poll).
A day or so ago , the cumulative views of content on the website passed 50,000. That is more than the prevalent global aHUS patient population , and is quite something for a website for a rare disease especially for a very rare disease like aHUS. It is rewarding to those who author the material for the site ,and , who have no personal financial motive in anything done on behalf of aHUS and its small community around the world.
The website gives evidence of achievement , and a visibility of a virtual global network and support for global patient engagement and advocacy that no others have emulated.
To “connect inform collaborate “ was what the website was brought in to do and that is what it is doing.
The content of the website transcends a spectrum of readership. It is likely that there will be something of interest for all who visit the site , whether it’s news on latest research, news about trials of Complement inhibitors , global aHUS patient groups , history of aHUS and discussions /answers to latest topics.
Unlike the social media , a website is less transitory and the alliance website can be seen as the Global aHUS Magazine , whose content is archived and retrievable. There are now over 160 blogs in the news section which can be, and are , still regularly viewed.
A visit to the website on a regular basis will be usually be rewarded with one or more new articles and updates to refresh the visitor’s knowledge of aHUS.
The site features in the top search results on many aHUS topics such as aHUS Pregnancy, aHUS Registry and Brain Fog. The latter topic has generated considerable organic traffic from the broader Renal community such is our outreach .A lot of views are result of such search topics but ,inexplicably, the domain we had to adopt because of technical constraints does not fare so well on an “aHUS” search term ; and the researcher would need to go the second or third page of Google’s ,and other search engine, results to find this one , so many potential viewers miss out, sadly.
We do not have the advantage of some in terms of resources and ability to advertise , we are not Wikipedia nor aHUS Source; but our organic growth comes from the content on offer to the Global aHUS community . On that alone , we should be on the top of any aHUS Internet search.
We hope that one day ,if enough find us and become regulars, then other aHUS patients will follow.
This is our challenge as we look forward to the next 50,000 views as we connect inform and collaborate with the aHUS world. Thanks for viewing.
