From Angela Metcalfe, CEO and Rachel Annals, EO, HAE UK:
In the last few months, we have had lots of meetings with healthcare professionals and our pharmaceutical company representatives. We have also just returned from the HAEi Regional Conference in Munich and were delighted to have so many UK patients attending and participating in the patient and caregiver track and having the opportunity to meet old and new friends. We learned lots at this event and are excited to use this knowledge to help our members.
As a patient advocacy organization, we are here to support you, the patients. We are always keen to hear what you most want to learn about, whether we are doing enough to share all the latest information with you, and, of course, we are always here to help when needed. We are aware many of you have recently had home delivery problems for medication via the Sciensus company. Due to pressure from our CEO on behalf of patients, we now have a dedicated HAE contact, so if ever you have any issues with your deliveries, do get in touch with us.
We are shortly going to start revamping our HAE UK Website. We want to make it easier to find information on new medications and treatments currently being researched, new ideas and practices to support mental health and wellbeing and to have access to all the latest research and trials currently taking place. We will still have the patient stories, information for those newly diagnosed patients, travel information, and, of course, more about how we can support you and advocate for all HAE patients in the UK.
In the coming weeks, we are going to undertake a large mailout, sending a letter and poster to every single GP Practice in the UK, as well as all A&E Departments. We hope this will help raise awareness and knowledge of HAE in the medical community, as well as to possible undiagnosed patients who may see the posters in waiting areas.
We are looking at running a few virtual workshops via Zoom or Teams. Topics for these sessions could include ‘Supporting my mental health and wellbeing’, ‘Should I take part in drug trials?’, ‘Getting the best support from my health care professional’, ‘Keeping an attack diary’ etc. We hope to run the first of these towards the end of November, more details will be sent to all UK members in the coming weeks.
We will, of course, still look to hold our annual patient day if this is something you, our members, would like.
We also have lots of other exciting projects in the pipeline, including working with Staffordshire University on a project about HAE, continued engagement with pharmaceutical companies about the latest developments worldwide in treatments and medications, and, most importantly, sharing information and learning from you.
We would love to hear from you with any feedback, comments, or suggestions: gro.kueah@troppus.
