HAE UK
@HAE_UK
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HAE UK is a registered charity dedicated to raising awareness of Hereditary Angioedema & supporting patients & their family members living with the condition.
Joined August 2012
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
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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: #haeukpatientsupport
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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
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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
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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
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We are here and ready to start our HAE UK patient day 2024 #haeukpatientsupport #haeukpatientday2024
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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 #haeukpatientsupport
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This year we are heading north and look forward to seeing lots of you in York! #haeukpatientday #haeukpatientsupport
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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
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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: #haeday #haeukpatientsupport
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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: #haeday #haeukpatientsupport
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Happy hae day :-) everyone! Let's celebrate together, share your story, and raise awareness of our rare condition #haeday2024 #haeukpatientsupport
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HAE UK have their very own branded roadsweeper! Our HAE UK Chairman, Ann, works for Quattro plant & persuaded them to ‘wrap’ one of their new roadsweepers with our details. It also marks a milestone for Ann’s daughters treatment: more to follow soon
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Phase one clinical trials for gene therapy: Our CEO Ann Harding, featured in an article in the BITA Networks Trading Alliance magazine, about her and her daughter Sian's experience. You can read the article here:
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NEWS: The MHRA (Medicines and Healthcare Products Regulatory Agency) has approved the use of Lanadelumab (Takhzyro) for paediatric patients, meaning it’s now available to 2-12 year olds, and is the first long-term prophylactic treatment in the UK for HAE patients aged 2 to 6.
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We are proud to take part in #RareDiseaseDay and raise awareness of HAE. Curious to know more about HAE? We’ve partnered with Dr Kiani to help explain what HAE is and how it impacts the body. See our full video here:
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