HAE UK

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

16/05/2026

HAE day is a moment to recognise the realities of living with HAE and the strength it takes to navigate the condition every day.

Over the past year, listening to the HAE community, through shared-decision making, has shown how powerful it is when people feel heard, supported, and involved in decisions about their care.

This has shaped the next chapter of the Power of Partnership, with an increased focus on emotional wellbeing and mental health for people living with HAE, their families, and carers.

At its heart, the Power of Partnership aims to strengthen relationships between patients and healthcare professionals through shared decision‑making.

Explore our new patient leaflets co‑created with HAE experts, plus more resources coming soon: https://www.haeuk.org

Today is global HAE Day! Hereditary Angioedema (HAE) is life-long, life-threatening condition. It’s one of 7000 rare d...
16/05/2026

Today is global HAE Day!

Hereditary Angioedema (HAE) is life-long, life-threatening condition. It’s one of 7000 rare diseases diagnosed and treated in the UK and affects approximately 1500 people.
Living with the fear of the next attack – HAE causes excruciating and unsightly swellings in the hands, feet, stomach, face and most dangerously in the airway – truly consumes life, day in and day out.
HAE UK supports all patients and those newly diagnosed or looking for diagnosis, up and down the country.

So here’s to HAE Day 2026 and to all those affected by HAE from Land’s End to John O’Groats and, thank you Quattro Plant’s road sweeper for helping us to raise awareness!

14/05/2026

For many people, living with HAE extends well beyond the attacks themselves.

The unpredictability, constant adjustments, and need to plan around the unknown can take a real emotional toll, affecting confidence, relationships, and everyday life.

Many people living with HAE, as well as their families and carers, carry pressures that aren’t always visible or talked about.

As HAE Day approaches, we’re recognising emotional wellbeing as a vital part of life with HAE. We believe in the Power of Partnerships creating space for open, honest conversations between people living with HAE and healthcare professionals.

By strengthening partnerships across the HAE community, we’re focused on supporting mental health and emotional wellbeing for people living with HAE, their families and carers.
To find out more visit https://www.haeuk.org​

Congratulations to Ann Harding, Chair of HAE UK for winning the We Are NOVI 'Women on Boards' category for her work with...
21/11/2025

Congratulations to Ann Harding, Chair of HAE UK for winning the We Are NOVI 'Women on Boards' category for her work with the Charity. Well done Ann!

Today is World Mental Health Day!Whether you’re taking part in activities to boost your wellbeing, getting outside for s...
10/10/2025

Today is World Mental Health Day!
Whether you’re taking part in activities to boost your wellbeing, getting outside for some fresh air, or opening up to a trusted friend — remember, your mental health matters. 💚
Let’s be kind to ourselves and to each other, today and every day.

Some positive news this week that NICE (The National Institute for Health and Care Excellence) has issued its final draf...
19/09/2025

Some positive news this week that NICE (The National Institute for Health and Care Excellence) has issued its final draft guidance for garadacimab (Andembry) for people 12+ with HAE, experiencing 2 or more attacks monthly.

In clinical trials, garadacimab significantly reduced the mean number of monthly attacks by 87% compared to placebo, and 62% of patients were consistently attack free over six months.

“HAE UK welcome NICE’s recommendation, which represents a step forward in reducing the burden of this condition” said Angela Metcalfe, Chief Executive Officer of patient support group HAE UK. “Improving patient choice by enabling access to new treatments in HAE is vital due to the highly individual nature of this condition, which can impact almost every aspect of a patient’s life. NICE’s decision to recommend garadacimab means eligible patients will now have access to an important treatment that offers the potential to live with less fear and uncertainty.”

Do you have children with HAE?If you do, please register them with us (if you haven't already done so), so we can make s...
06/09/2025

Do you have children with HAE?

If you do, please register them with us (if you haven't already done so), so we can make sure we support them too.

We are currently working with one of our HAE youngsters to develop a dedicated area on our website for children and young people, providing information and offering peer support. We hope to be able to share more about this with you soon.

To register as a member, visit www.haeuk.org/register

We recently sent you an email about our patient days, asking for your thoughts. Lots of you have responded, and we are p...
22/08/2025

We recently sent you an email about our patient days, asking for your thoughts. Lots of you have responded, and we are pleased to be able to gather the feedback and look at what you, our members would like in the future.

If you haven't yet replied, or you can't see the original email, please let me know and I will resend to you. It is really important to know your thoughts and suggestions, and don't forget, you could win a prize!

Best wishes,
Rachel
[email protected]

Stress and anxiety can be two of the biggest triggers for attacks in HAE. Working with Clinical Psychology Student Sarah...
08/08/2025

Stress and anxiety can be two of the biggest triggers for attacks in HAE. Working with Clinical Psychology Student Sarah Olaluyi at the University of Staffordshire, UK, we are pleased to support Sarah with the launch of her six week interactive stress management sessions that begin in September.

These sessions are entirely free, and all that is required is for you to register.

To take part, or if you have any questions, please contact Sarah direct: [email protected]

We have recently sent out emails to all of our members, and received a number of Non-delivery notifications. If you have...
01/08/2025

We have recently sent out emails to all of our members, and received a number of Non-delivery notifications. If you have been registered with us in the past, but have not received emails from us recently, please get in touch so we can check we have your correct up-to-date contact details. Please check with your family members too, so we can be sure we are able to keep in touch with you about all things HAE related 🙂 [email protected]

Address

PO Box 448
Bridgwater
TA69GB

Telephone

+447975611787

Website

,

Alerts

Be the first to know and let us send you an email when HAE UK posts news and promotions. Your email address will not be used for any other purpose, and you can unsubscribe at any time.

Contact The Organisation

Send a message to HAE UK:

Shortcuts

Share

Category