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A UK website about atypical Haemolytic Uraemic Syndrome (aHUS)

That was the aHUSUK that was

That was the aHUSUK that was

Today Monday 3 October 2016 is the day that aHUSUK ceases to be .

For over five years it has worked for aHUS patients and families doing what it said it would do when a group of aHUS patient families came together in Wimpole Street London on 10 September 2011.

It became a registered charity.

It provided a patient voice as the AGNSS CPAG and NICE evaluations of eculizumab were done.

It provided a network for patient support and advice

It established relationships with renal, rare disease, specialised NHS service, complement  and aHUS organisations at home and abroad

It provided news and learning about aHUS in over 400 wide ranging  blogs on its website

It introduced a patient card now held by 1500 people around the UK just in case they need it.

Its website has been a record for history of what happened to aHUS  in 2011 to 2016  in the UK .

Its website is ranked in the top 18 million websites out of over 600 million globally   .

It run petitions which tens of thousands of people supported.

It has raised over £50,000 for research

Its trustees worked with members to punch far above its weight, replicating much of what larger highly financially supported health groups do

Whilst it can not be said that it involved every person affected by aHUS all of the time it did involve enough for some of the time

It is now time for another  organisation to engage all of the aHUS community for enough of the time to do even more for the disease which embraces and unites us all.

Goodbye from ,and to, aHUSUK as it joins the ages.





2 Responses to That was the aHUSUK that was

  1. Dennis Crane says:

    Sad to see it end, but so proud of all you have achieved in so little time, and to have met some of your wonderful members!
    Dennis Crane. former North,(latterly North West), Region Advocacy Officer.
    National Kidney Federation.

    • aHUSUK says:

      Thank you Dennis and we appreciated the support you gave us in the early days when we were establishing ourselves.

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