HAE UK

NEWS: NICE has issued its final draft guidance recommending garadacimab (Andembry) for people 12+ with HAE, experiencing 2 or more attacks monthly. Trials have shown a significant reduction in attack frequency. #haeukpatientsupport

Wishing you all a happy and sunny Easter weekend, with good health and maybe a few treats 🐣

Did you know that HAE UK is over 14 years old. With the work of our CEO, EO and team of dedicated trustees, we continue to support all those with HAE, and their families, in the UK. You can read our HAE UK's aims on our website: haeuk.org #haeukpatientsupport

Happy Rare Disease Day 2025. Please join us in supporting Rare Disease Day to raise awareness of the 6,000+ rare diseases, including HAE, today 🙂

HAE UK recently attended the Palace of Westminster alongside patients, consultants, nurses, Members of Parliament and Members of the House of Lords, to discuss the patient and clinician experience of living with Hereditary Angioedema #haeukpatientsupport

We are pleased to bring you our latest newsletter, with an update on a few things from the last couple of months. We would love to hear from you if you have any topics you would like to include in future newsletters. #haeukpatientsupport

New medications and gene therapy are bringing hope to patients with the rare disease Hereditary Angioedema. Some treatments are so effective, giving the opportunity of an ‘attack free’ life. Want to know more? Visit our website: haeuk.org #haeukpatientsupport

It's Friday again & we are well into January already! We are starting to look at our plans for the year ahead. Angela, our CEO, & Rachel have been busy behind these scenes working on projects, which we look forward to sharing with you in our next newsletter #haeukpatientsupport

Happy new year to all of our members! We hope you had a great festive period and are settling in to 2025 with some fun plans. Don’t forget, we are here to support you with your HAE, and we’d love to hear what you’d like from us… #haeukpatientsupport

#christmas2024 #haeuk #HAEUKpatientsupport

We start the conference with an amazing eulogy and remembrance of Prof. Marcus Maurer, who was the driving force behind creating the GA2LEN & HAEi network of Angioedema Centers of Reference and Excellence (ACARE) #nevergiveup

Our leadership team, along with some of our UK HAE consultants, are at the HAEi Global Leadership Workshop & Global Angioedema Forum in Copenhagen this weekend. We are here to learn & meet other leaders in the field of HAE #navigatingthefuture #haeuk #haei #globalleadership

We are here and ready to start our HAE UK patient day 2024 #haeukpatientsupport #haeukpatientday2024

Places are filling up for our 2024 patient day in York, but we do still have space if you wanted to join us. Accommodation is also available if you wanted to come for the weekend. You can register to attend: haeuk.org/patient-day #haeuk #haeukpatientsupport

Have your family members been tested for HAE? #haeuk #haeukpatientsupport

This year we are heading north and look forward to seeing lots of you in York! #haeukpatientday #haeukpatientsupport

On hae day :-) we would like to extend our thanks - to our HAE UK members for offering support and friendship to each other, to those of you who have taken part in events to raise money for HAE UK, and to our fantastic industry representatives #haeday #haeukpatientsupport #thanks

On hae day :-) we are pleased to bring you our latest newsletter, with information about some off the things we have been working on at HAE UK over the past weeks. You can read the newsletter here: haeuk.org/wp-content/upl… #haeday #haeukpatientsupport

Today, we are excited to announce the launch of our latest report, “The power of partnership: shared decision making in HAE.” We are excited to share the full report with you on our website: haeuk.org/power-of-partn… #haeday #haeukpatientsupport

Happy hae day :-) everyone! Let's celebrate together, share your story, and raise awareness of our rare condition #haeday2024 #haeukpatientsupport