United Kingdom

In brief

  • Name for organization: HAE UK
  • 672 members at 1 Jan 2021
  • Name of approved HAE treatments:
    • Danazol
    • Oxandrolone
    • Tranexamic acid
    • Berinert
    • Cinryze
    • Ruconest
    • Icatibant
    • Lanadelumab
    • Berotralstat (available on the early access to medicines scheme (EAMS) and currently undergoing approval)

Fun or interesting things about the United Kingdom

  • London is home to about 8 million people and over 300 different languages are spoken in London’s schools.
  • Stonehenge, in Wiltshire, UK, is claimed to be one of the oldest monuments in the world. Scientists believe that it was built over in 3,000 B.C.
  • Llanfairpwllgwyngyll-gogerychwyrndrobwlllllandysiliogogogoch is the name of a town in Wales. It is the longest name of any place in the world.

What positive changes have happened for people with HAE, in your country, from 2012 to now?

We have had many positive changes in the UK since 2012.

We now have central, specialised commissioning for all available HAE medications so that every registered HAE centre in the UK can prescribe any of the medications to treat HAE.

We have over 30 registered HAE centres in the UK, each of which has a clinician and specialised nurse who are interested in and treat HAE.

There is now a module about HAE in all medical students training, which will greatly help doctors and nurses to recognise the signs of HAE in those who may be undiagnosed.

There are now various policies governing HAE treatment. This means that there is a standard approach to how HAE is treated, and the treatment options on offer are discussed with the patients to try to find the best treatment for each individual, rather than a ‘one size fits all’ approach. This has enabled individuals to select the best treatment to fit their lifestyle and achieve a better quality of life.

What is the biggest achievement for people with HAE, in your country, from 2012 to now?

Our biggest achievement for people with HAE in the UK since 2012 is the expansion of the choice of medications available for the treatment of HAE. The development of home therapy training, which is offered to patients who suffer regular attacks, and ensuring that prophylaxis (prevention) with C1-INH, and now lanadelumab, is widely available, has been life changing for so many of our patients. We have a great network of patients who support and encourage one another, many of whom are pleased to support the development of new treatments by taking part in clinical trials through their clinics, and participating in surveys about potential new medications.

What is the resource, event or activity that you are most proud of organizing for people with HAE in your country, from 2012 to now?

As an organisation, HAE UK has so many things that we are proud of achieving since 2012.

Our Annual Patient Days have grown year on year and stand out as really informative and fun meetings. We choose a different location in the UK each year and have over 100 attendees at each event. Many of those attendees travel all over the country to join us each year because they have made great friends with other members and their families, and they are really keen to hear the latest news from our dedicated HAE specialist clinician presenters.

We are proud of our HAE UK Youth Ambassadors and their advocacy work. The team has grown since our first Youth Ambassador joined us, and we now have a growing group of youngsters who are keen to learn about HAE and share their knowledge with others. Some of these younger members also created our fantastic Percy the Pufferfish character, and his short story about experiencing HAE.

We are also really proud of our new Nurse Training Programme which is due to launch very soon.

What support/ resources have you used from HAEi? What has HAEi helped you to achieve?

HAE International is always there to support us at HAE UK. Just over 10 years ago, HAEi were there to help us set up HAE UK and Henrik Balle Boysen joined us for our inaugural meeting in London to welcome our first HAE members. HAEi is always happy to support our HAE UK Annual Patient Days, sending a representative to attend and present whenever invited, to give an overview on what is happening around the world.

We are also enormously grateful for the HAE Global Conferences which many of our members are always really keen to attend, and for the information we gain meeting with other countries and hearing from the leading HAE clinicians around the world.

One of the HAEi resources we signed up to and highly recommend is the HAEi Connect system. We find it such a simple, secure and easy way to communicate with our 672 members, and it is fully GDPR compliant so we know our members’ details always remain safe, and we

Your Next Step… What do you want to achieve for people with HAE in your country by 2030?

By 2030 there are many things that HAE UK would like to achieve. We are working with HAE clinicians in the UK to recognise childhood attacks sooner. With the more modern treatments coming into the world, hopefully childhood HAE attacks will be treated earlier. We hope that children with HAE will no longer have to miss school and they can go on to College and University and have a life that is not limited by their condition, which is what has happened to so many older HAE patients before modern treatments were available.

We have some great inspirational HAE patients who have achieved so much despite having HAE, they help us to support our younger patients and encourage them to not let having HAE stop them from achieving their dreams.

Film about setting up HAE UK 11 years ago (was 10 when film was done!) (2020)

Our achievements (2018)

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