HAE UK

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HAE UK is a registered charity supporting patients and their family members with Hereditary Angioedema in the UK.

26/10/2026

💜 When HAE is part of a family’s story, having the right information can make a real difference.

Talking openly with relatives about HAE can help families understand their health history and know what questions to ask their healthcare team.

For those who may be affected, knowing their HAE status can provide clarity and help them feel more prepared for the future. 💜

✨ Let’s keep raising awareness and encouraging conversations about HAE within families.

19/10/2026

💙 Living with HAE can feel different for everyone, and finding the right approach can be an important part of living well with the condition.

Having regular conversations with your healthcare team can help you understand your options and feel more confident about your care.

Your needs may change over time, so it’s important to keep communicating with your specialist and asking questions whenever you need to. 💙

12/10/2026

💛 Living with HAE can mean getting to know your body and recognising when something doesn’t feel quite right.

Keeping track of your experiences and talking openly with your healthcare team can help you feel more prepared and supported in managing life with HAE.

Everyone’s experience is different, and what works for one person may not be the same for another.

💛 Sharing experiences and supporting each other can help build a stronger HAE community.

07/10/2026

💙 WE WANT TO HEAR YOUR HAE STORY! 💙

At HAE UK, we know that behind every HAE journey is a unique story — and we’d love to help share the voices of our amazing community. 💜

We’re looking to feature HAE UK members on our social media in a new “Meet the HAE Community” series. 👥

With your permission, we’d love to introduce you and share a little about your journey, your experiences and what being part of the HAE community means to you.

You could share things like:
✨ What living with HAE has taught you
💙 One thing you wish people understood about HAE
🌟 Your advice for someone newly diagnosed
👥 What the HAE community means to you
❤️ Something positive you’d like to share with others

Your story, your choice. We will only feature you and your story with your permission, and we’ll discuss what you’re comfortable sharing before anything is posted.

📩 Interested in being featured? Email [email protected]

Let’s celebrate the people behind our community and show that no one has to face HAE alone. 💙

Different journeys. One community. Stronger together. 💜

05/10/2026

💗 HAE can be different for everyone, and symptoms don’t always follow the same pattern.

For some people, HAE may become part of their lives from a young age, while others may discover they have the condition much later.

Recognising that symptoms can appear at different times is another important part of understanding HAE. 💗

✨ The more we talk about HAE, the more awareness we can create.

29/09/2026

✨This is what community looks like ✨

Different journeys
Different experiences
One HAE community 💙

Thank you to everyone who joined us and helped make Patient Day 2026 so special.

A huge thank you to our sponsors!

Together, we’re stronger 💙

28/09/2026

💜 Genetics can sometimes be more complicated than we realise.

For some people living with HAE, discovering their diagnosis may come as a surprise, particularly if no one else in their family has been diagnosed.

This is why raising awareness of HAE is so important — helping more people recognise the condition and understand that every diagnosis can have a different story behind it.

💜 Knowledge can make a difference. Please share to help spread awareness of HAE.

23/09/2026

💙 Patient Day 2026 is almost here!💙

We look forward to seeing so many of you there for two days of inspiring talks, real conversations, expert insights and time together as a community.

Safe travels to everyone attending – we can’t wait to welcome you and spend the weekend together! 👋

21/09/2026

💛 Living with HAE can bring challenges that aren’t always visible to others.

That’s why understanding, patience and support from the people around us can mean so much. Whether it’s a difficult day or simply needing someone who understands, having a supportive community can make a difference.

💛 Let’s keep talking about HAE, listening to each other and helping to make sure no one feels alone.

18/09/2026

🌟 1 WEEK TO GO! 🌟

HAE UK Patient Day 2026 is getting closer! 💙

Join us on 26th & 27th September at the Holiday Inn, Bloomsbury, London for a weekend of inspiring guest speakers, patient stories, Q&A, support and connection.

✨ FREE EVENT — open to adults and children aged 12+.

📧 Registration is required: [email protected]

We can’t wait to see you there! 💙
PatientSupport HAECommunity

Address

Marine House, 151 Western Road
Bridgwater
RH163LH

Telephone

+447975611787

Website

http://www.haeuk.org/, https://www.instagram.com/uk_hae/

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