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A UK website about atypical Haemolytic Uraemic Syndrome (aHUS)


Despite the disappointment of not hearing the outcome of the AGNSS review of aHUS treatment in England  before the AGM , aHUSUK members turned out in increased numbers for the AGM and Conference in Solihull today. Newcomers were welcomed in and helped create a very friendly and supportive atmosphere which seems to build each time we meet.

More information about the reports  and discussions at the AGM will appear shortly but it was evident that much had been done in our first year and that considerable progress had been achieved.Members were sporting some of the new aHUSUK fundraising merchandise( available from our new “virtual on line shop” on this website in the near future at reasonable prices!)

The Conference session begun with a motivational talk from Dennis Crane of NKF about patient advocacy and engagement and followed after lunch with a concise summary by Professor Tim Goodship of  where the aHUS treatment service stands at present. Professor Judith Goodship then gave a talk about the work she had been doing on statistical predictive penetration of aHUS in families with CFH genetic mutation to explain seemingly random outcomes in families over generations.

Professor Neil Sheerin gave a very clear presentation on the issues surrounding transplants and patients with aHUS, and the positive outcomes seen with eculizumab, in not only supporting successful transplants, but also restoring kidney function.

Dr David Kavanagh gave an illustrated talk on genetic research into aHUS which made complex issues easier to understand. A “space invaders” like illustration of the working of the filtration system of the kidneys and the impact that an uncontrolled complement cascade has was particularly memorable !

After a wide ranging and very informative question and answer session with our panel of experts the conference came to a close. Judging by the “buzz” created  and the immediate  feedback  a good and worthwhile day was had by all.

2 Responses to aHUSUK AGM and CONFERENCE

  1. Jason Thelwell says:

    Thank you to everybody that contributed, as always after these sessions I come away having learnt that little bit more about “our” devastating disease.

    I think the point Dennis made about “if we each do a little, we all do a lot” is very important and if every person affected directly or indirectly strives to educate family, friends and most importantly the less than well informed medical professionals we sometimes encounter about aHUS this can only lead to a greater understanding and therefore better outcome for the unfortunate few affected by this extremely rare disease.

    Keep up the good and valuable work.

  2. ahusuk says:

    Dennis said this about our conference “the renal community is a relatively small one, and I am inspired always by the courage, dignity and fortitude of so many patients and carers whom I meet.

    Hearing from Margaret on Saturday about the tragic loss of her two sons at such a young age, and seeing a vibrant young woman like Emma thwarted in having the new life transplantation could bring her is a powerful motivator for me to try to give something back in a small way for the new life I have been blessed with.”

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