The aHUS alliance is made up of affiliated aHUS organisations from around the world, which are in constant contact, and collaboration, with each other; but, about once every 12 to 18 months, alliance representatives gather together to listen to educational talks and have discussions about future projects. This website, for example, is the result of one of those discussions at the last gathering of the alliance.
That was held in London at the Senate House University of London, alongside the UK aHUS Patients and Families Conference in June 2015..
As they were in town anyway, some of the representatives attending the UK conference were asked to give a brief introduction about their national aHUS organisations, treatment in the countries and their personal encounter with aHUS
Introduced by Len Woodward of aHUSUK, the aHUS advocates were :
|Nacho Nunez||from Germany||Die Selbsthilfe|
|Kerri Grey||from Australia||aPSGA|
|Joyce Cransveld||from The Netherlands||Nierpatienten Vereniging Nederlands|
|Kamal Shah||from India||AtypicalHUS India|
|Iliana||from Russia||Another Life|
|Linda Burke||from USA||The atypical HUS Foundation|
Click here to watch a 15 minute video of what they had to say, and also to get a glimpse of some of the alliance’s affiliates.
Videos are a good way to get across aHUS topics and help with national aHUS advocacy .More videos about aHUS and aHUS patients around the world have been included in a “playlist” in the Info Centre on this site click here to see the current list
All nations are invited to add links to their aHUS advocacy videos to the list ,please submit such links with brief information about the content to firstname.lastname@example.org“.