Currently the aHUS patient website belonging to the atypical HUS Foundation, www.aHUS.org is “ under construction” ,or being reconstructed, so it is temporarily “dark”
The Foundation’s website is going through it third reincarnation.
The not for profit organisation that began , incredibly, over 20 years ago, The Foundation for Children with atypical HUS, created the first patient website , www.atypicalhus.org when such things were not so common in those early days of the Internet.
It lasted into the 2010s but overlapped with a second website begun in 2009 by Linda Burke on behalf of the Foundation. This website went beyond the “typical” site and included what was effectively a Facebook , Twitter type social media function, which allowed anyone anywhere in the world to post something about aHUS but also to message each other.
It grew rapidly and its varied threads captured the many interests of its multiple visitors. There was much to see.
Eventually it went dark when a new Foundation website was introduced this time with the prime aHUS URL www.aHUS.org.
This year the Foundation decided to move to its fourth version and that is why its site is temporarily dark.
The new site will be revealed soon.
Websites are ubiquitous these days even for aHUS unlike when Bill and Cheryl Biermann began theirs twenty years ago.
Visitors see them and may not be aware of what has been going on behind the scenes to create, launch and maintain them so that their content remains relevant to those want to know more about a very rare disease.
One day all aHUS patient websites will disappear but at the moment that is far from the minds of those working hard to get www.aHUS.org up and running once more. And to get back its visitors to browse the new site
Article No. 593