From CEO Angela Metcalfe

Well, it’s been a busy few months since I took over as the CEO of HAE UK! We have lots and lots of ideas going forward and a few exciting projects that we are hoping to get off the ground in the next few months.  

One project that has just started is we asked HAE UK members to participate in a prodromes survey, we think the first of its kind in the UK. We asked members to take an online survey answering a series of simple straightforward questions about early warning signs that they may identify before an attack. We had a phenomenal response to the survey, so it will be interesting once we have collated all the information to see what indicators and signs seem to be most identifiable.

Good work has also been taking place with two different platforms recording patient information, which will be from not just a clinical perspective, but that of individual patients.  It would potentially sit alongside the NHS App that 23 million people in the UK have now signed up to and will hopefully enable HAE patients to have all their treatments, breakthrough attacks, clinical and medical history sitting in one place: a huge step forward in supporting patients when they may need to present for emergency treatment.

We have also been putting plans in place for our next Patient Day. This will be our first in-person patient event for three years, due to the COVID-19 pandemic, and we look forward to seeing lots of our members there. The event will likely take place in November and we will share more details once we have finalized them.

Our biggest project going forward is about raising awareness of HAE, particularly in the area of Emergency Medicine. We are looking at putting together a short presentation that can be included as part of regular training and ongoing professional development for health care professionals such as Registrars, Consultants, Immunologists, Junior Doctors, and senior nursing staff working in emergency medicine. This needs a huge amount of background work, but we hope that we can start with our first presentations by late Autumn this year.