www.ahusuk.org was a key part of the work of aHUSUK from 2011 until 2016 , when aHUSUK was wound up.
Its members at the final AGM asked for the website to be kept as a legacy of that period when a minority of UK aHUS patients worked together to get the access to the treatment and specialised service that aHUS patients enjoy today. Without them many more would be living on dialysis now and in the future.
As Professor Tim Goodship once said “… a patient-family support charity (aHUSUK) has played a pivotal role in lobbying for improved understanding of the disease and better care for those affected.”
So that challenge has been met and the UK now has a world class service for aHUS
And the time has come to bring the curtain down on this website and its activities and pass the torch on to others , where those new to aHUS, or who want to learn more about what is happening in the UK as far as aHUS is concerned, can go for assistance and information.
- The National Renal Complement Therapy Centre‘s website has news and information about aHUS and the NHS specialised service for aHUS. Click here
- Kidney Research UK , the partner for Answers for aHUS has information about aHUS and research into the disease on its website Click here
- Rare Renal has a Rare Disease Group for aHUS and its webpages have information for clinicians and patients about aHUS registries, research and treatment protocols. For the aHUS pages click here
- aHUS alliance is an international aHUS organisation with news and information about aHUS around the world, and provides a lead on aHUS Awareness Day. Click here.