{"id":44105,"date":"2020-12-28T12:06:04","date_gmt":"2020-12-28T11:06:04","guid":{"rendered":"https:\/\/haei.org\/?p=44105"},"modified":"2020-12-28T12:06:04","modified_gmt":"2020-12-28T11:06:04","slug":"news-from-the-uk-2","status":"publish","type":"post","link":"https:\/\/haei.org\/news-from-the-uk-2\/","title":{"rendered":"News from the UK"},"content":{"rendered":"

From CEO Laura Szutowicz, HAE UK<\/i><\/p>\n

Much to my surprise, I am already writing another report for Global Perspectives<\/i><\/span>. At the time of the last one, we in the UK had come out of lockdown, and there was a gradual return to normal. I was kicking myself, thinking we had decided to make the UK Patient Days virtual. The Patient Days are an enormously important part of our calendar, and they are hugely enjoyable, a chance to catch up with old friends and an opportunity to involve the new ones. We had kept in touch with our members via very successful Zoom meetings, and our wonderful expert panel gave freely of their time to give presentations and answer questions, but I was not sure that the virtual event would work.<\/p>\n

Well, I am so happy to have been proved wrong! The virtual event has been a massive success, due in no little part to Rachel Annals, who collated and edited the various presentations. Our fabulous panel of experts proved how we have clinical support that is absolutely top class, and the patients who were kind enough to share their patient stories yet again showed how having HAE does not stand in the way of living your best life.<\/p>\n

\"\"We started with the \u2018virtual cocktail party\u2019 on Friday evening. The evening pre-meeting reception has become a feature of the physical Patient Days, and I was a little worried that it might be Rachel and me staring at one another over a glass. However, lots of friends turned up, notably Furkhanda (who is always a major support at all our events) drinking something that I think was vaguely berry-flavored (hence part of her \u201cfive a day\u201d fruit and veg!), Nikki Pitt with an enormous red wine\u2026<\/p>\n

One of our Trustees, Tim Crouch and his wife Sue, definitely won the \u201cbest turned out\u201d prize both being in immaculate evening dress. We had circulated a menu of cocktails and snacks, and it was wonderful to see everyone enjoying themselves. Seeing everyone in the little Zoom boxes is a bit like a box of chocolates \u2013 don\u2019t know who to pick!<\/p>\n

Other events were running over the weekend. People were reminded about the event by being sent an invitation card which was actually full of lovely flower seeds to plant for next year. We thought this was a better way of remembering the event than something that might get thrown away. The youngest members of HAE UK were sent a Percy the Pufferfish bag with a copy of the Percy book, \u201cNico\u2019s Lunchbox\u201d, some crayons and a coloring competition. The winners of each age group of the coloring competitions were Dean Harber, Charlena Goodier and Charlie Hill. Well done to them! And many thanks to all the other entrants.<\/p>\n

Then on to the Patient Day itself. There were many presentations, some introducing the various people involved in HAE UK and what HAE UK can do for members. There was an excellent presentation by Ann Price, the founder of HAE UK, Henrik Balle Boysen and Hilary Longhurst detailing the background of why there was a need to start an organization and how they went about setting it up. We then had excellent presentations by various of our clinicians about topics:<\/p>\n