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.