From CEO Laura Szutowicz and Executive Officer Rachel Annals
HAE UK has had a busy summer with some great events thanks to our amazing members. Huge thanks to Ann Harding, one of our Trustees, for organizing the Family Fun Day at the Railway Hotel, West Horndon. June and Peter Cole kindly came along to help, and Rachel and Laura were kept firmly under control by Miss Darcy Annals. This was a perfect venue with plenty of car parking and a safe enclosed garden where we were able to set up the bouncy castles and other activities, garden games, crafts and also included a very charming pony who cheerfully gave rides to all the children.
We were a little worried by the weather initially as rain seemed threatened but actually we were lucky to have a glorious afternoon. The pub garden was packed, the face-painting lady was unable to take a tea break and the bouncy castles saw great use. Declan, Ann’s partner, was the super-chef in charge of the barbecue and spent all day producing delicious food, we had some fabulous prizes donated for the raffle and a great time was had by all. It was lovely to see how quickly the children got along with each other even though they had not met, and the ‘regulars’ in the pub all quickly got involved, very generously buying raffle tickets (they were all after the box at a West Ham football match) and lots of people enquiring who we were and about HAE, so as well as a fun day we hopefully were able to raise some awareness of the condition.
Our next great event was the Young Advocates meeting at Drayton Manor, with 14 attendees. Alex, Jack and Rhiannon had been to the training meeting in Atlanta, USA and they shared their knowledge with other members at the first of our Youngsters only meetings. Our three youngsters had a fantastic time in Atlanta working with other HAE youngsters from across the world, making new friends and supporting one another. They returned with lots of ideas on how to advocate which they will use to help develop the growing youngsters team in the UK. As well as learning about advocacy they brainstormed more projects that they can work on through the coming year to raise awareness. They then were able to spend the time in the Theme park, which was kindly sponsored by some of our amazing fundraisers.
At the HAE UK patient day in November 2018, the youngsters who were participating in the event decided to create a story, which they titled ‘Percy the Pufferfish’. The organization recently commissioned an illustrator to help turn the story into a book, and it has now been printed. The book is a simple story about HAE aimed at younger patients, and it will be available at our two Patient Days.
We have two more events coming up soon: On 2 November 2019 members will be meeting in Glasgow, Scotland for the 4th Scottish patient day – and 23 November 2019 we will be holding the 9th annual patient event, this time in Manchester. As always, we are having a little reception the night before so that people can get a chance to meet up with old and new friends. More details, including registration, are available on www.haeuk.org.
We are very excited that Lanadelumab was passed by the National Institute for Health and Care Excellence so that, assuming there are no substantiated objections, it will soon be available to be prescribed under NHS England guidelines. Effectively, this will place it in the same area as C1-INH prophylaxis, so for patients having two or more clinically significant attacks per week. Rachel and Laura were involved all the way through the process and it was pleasing to have the NHS England team very complimentary about the evidence we provided, much of which was taken from our patient surveys, interviews and discussions at the Patient Days.
HAE UK has a new logo to reflect our continuous working together with patients, medical professionals and others to grow our organization for the benefit of HAE patients. We will gradually change our literature and so on as we run out.
