From Laura Szutowicz, CEO of HAE UK:

Normally at this time of year, we are in overdrive planning for the Patient Days which we hold in October and November, with the Scottish one first and then the National one in November.

We were very excited about this year as it was going to be our 10th Anniversary! HAE UK was started as an autonomous organization in 2010 following on from ending of the PIA, which had represented HAE patients as well as Primary Immune deficient patients. The PIA left an enormous vacuum, and the representation of HAE patients and families was taken on by Ann Price, who with her husband John started HAE UK with advice from Anthony J. Castaldo, Henrik Balle Boysen, and HAE International.

How things have moved on from small beginnings! We now have some 650 members and, following on from Ann’s great work, HAE UK is growing all the time.

But sadly, the COVID-19 outbreak has made us reassess our plans. Obviously, it is not going to be possible to hold a large meeting with the social event we had also planned. But we have become quite expert with Zoom and other forms of ‘virtual’ meetings, and so we are going to have a virtual Patient Day! We will combine the Scottish day with the National one, as no travelling will be involved, but the format will be very much the same. We will have the wonderful, informative presentations from our clinicians as well as the inspirational patient stories – all done to the camera. We hope that this will not only ‘fill the gap’ for this year but will be a useful addition to our website as a resource for years to come.

We also intend having a virtual cocktail party to take the place of our usual pre-meeting social evening! So, we will be expecting everyone to dress up in their finery and raise a glass to the screen. More details about this and the Patient Event will follow once we have finalized the details.

We have run many more Zoom meetings over the summer, with a selection of our clinicians presenting and available for ‘Q&A’. We have also run some very successful fun quizzes with Rachel Annals as quiz mistress extraordinaire. These have been a very good way of keeping in touch with members, and it has been great to see old faces and some new ones too.

We are losing one of our medical advisory panel to New Zealand! Dr. Longhurst and her husband are fulfilling a long-held desire to live there. They are looking forward to indulging in their favourite pastimes of trekking in the beautiful New Zealand National Parks, as well as swimming and skiing. They are also hoping to get a small boat. However, Dr. Longhurst is not giving up medicine but will be working in Aukland General Hospital and Greenlanes Health Centre with Dr. Karen Lindsay. There are 53 adult patients in New Zealand and their families, so she is hoping to help with an audit that Dr. Lindsay is setting up and also clinical trials there. She will also be looking after primary immune-deficient patients and working in the labs. She is looking forward to working with Fiona Wardman, who is in charge of Australasia and continuing her work with them. Dr. Longhurst intends to return to UCLH twice a year to the HAE clinic there once a vaccine for COVID-19 is available. We are hoping she will also still be available for us to consult as a member of our medical advisory panel, which at least we can do remotely!

We are delighted that the UK has been given the opportunity to participate in the HAE International socio-economic study, run on similar lines to the Nordic and USA ones. We have already had quite a good uptake with about 150 respondees, and the HAE network clinicians are also recruiting patients into it. We hope this will be a useful tool to reinforce our arguments for the various new products coming for HAE patients, the next one to be considered for use in the UK is oral prophylaxis, and there are of course several other products in clinical trials which are now able to restart.

Things in the UK are gradually returning to some sort of normal, with shops, pubs and restaurants opening. Schools will have reopened by the time you read this, and most hospitals are running face to face – or mask to mask? – clinics again. Clinicians have generally been very good about keeping in touch with patients even when they were only able to be consulted by phone, and at the height of the pandemic in the UK, many of our immunologists were drafted into the COVID-19 wards. At least two of them contracted COVID-19 because of this but thankfully did not have too severe illness. We are so lucky to have these wonderful people look after us!

I hope that the other members of HAE International have remained well and that we can now all look forward.