About Us

About Us

Aortic Dissection Awareness UK & Ireland is the national patient charity for Aortic Dissection in the UK & Ireland. Founded by a small group of Aortic Dissection survivors in 2016, we became a voluntary unincorporated patient association in March 2018 and a registered charity in April 2022. We are the voice of Aortic Dissection patients in the UK & Ireland.

Our work involves raising awareness of Aortic Dissection; providing vital information and support for patients and families affected by the condition; working with healthcare providers to improve diagnosis & treatment and reduce healthcare inequalities; and partnering with researchers to bring forward new insights that improve future care for Aortic Dissection patients.

We measure our success by the increasing number of Aortic Dissection survivors joining our free online support network – currently over 700 – and by the changes we see happening in the Aortic Dissection landscape. Recently, these have included:

• Publication of the first-ever national guidance on diagnosing Aortic Dissection in an emergency – the result of a joint initiative by The Royal College of Emergency Medicine and the Royal College of Radiologists, working with our highly-successful THINK AORTA campaign.
• Agreeing a national set of Aortic Dissection research priorities with the Department of Health, which are now being used by funding bodies to guide their decision-making on Aortic Dissection research proposals.
• Publication of the new NHS England acute Aortic Dissection toolkit, to enable Aortic surgery centres to improve their services and patient pathways and end the unwarranted regional variation in care and outcomes that currently exists.

We partner with healthcare organisations, researchers, policy-makers, industry and charities who share our vision, enabling them to access the power of the patient voice, become more patient-centred and deliver real patient benefits.

Contact us if you would like to know more…

Events

Every year, we award the honour of hosting our flagship annual conference – Aortic Dissection Awareness Day UK – to a centre that we believe is doing excellent work in the field of Aortic Dissection. Over the last 6 years, we have recognised the work of the Royal Brompton NHS Trust, the Liverpool Heart & Chest Hospital, Barts Health NHS Trust, the BHF Cardiovascular Sciences Research Centre at the University of Leicester and the Bristol Aortic Service.

In 2022, on 19th September, our hosts will be University College London, where a significant research programme about ‘Engineering the Future of Aortic Surgery’ is under way, using cutting-edge computer simulations and artificial intelligence.

Projects

We also have a number of current projects targeting improvements in the diagnosis and care of Aortic Dissection patients in the UK & Ireland:

Think Aorta: Our patient-led Think Aorta campaign raises awareness of the condition and provides accredited learning resources to help medical professionals improve the diagnosis and treatment of Aortic Dissection in the emergency setting.  See the dedicated website…

The new NHS Toolkit for Thoracic Aortic Dissection: We are a part of the NHS Working Group developing a new toolkit to improve standards of care for Aortic Dissection patients.

Aortic Dissection: A UK Strategy: Our patient-led partnership is developing a national strategy to address the UK’s challenges in the diagnosis and treatment of Aortic Dissection, which costs 3,000 lives every year.

Screening/Prevention: We are collaborating with the BHF Cardiovascular Sciences Research Centre at the University of Leicester in a research programme that we expect will lead to a screening and treatment pathway for those at risk of Aortic Dissection.

Membership

Membership of the national patient charity is free for patients, relatives and carers and for healthcare professionals in the UK & Ireland with an interest in Aortic Dissection. Becoming a member enables you to show your support for the charity, ensures that you are kept informed of our news, invited to our events (including our flagship annual conference Aortic Dissection Awareness Day UK) and entitles you to take-up one-of our many volunteering opportunities, perhaps even serving on the Committee, or as a Trustee, if you so wish.

Please click the button to become a member…

Our Organisation

We are legally constituted as a Charitable Incorporated Organisation (CIO), with voting members other than the trustees.

You can view our governing document here.