What we do

Aortic Dissection Awareness UK & Ireland is the UK and Ireland patient association for people affected by Aortic Dissection and their families. We are the voice of Aortic Dissection patients in the UK & Ireland.  We also work very closely with the professions for the benefit of all affected by Aortic Dissection.

Our work involves raising awareness of Aortic Dissection, its diagnosis and treatment; providing vital friendship, support and advice for patients and family members; encouraging research into the condition; and working with healthcare providers to ensure that best practice diagnosis and care for Aortic Dissection are implemented consistently across the UK & Ireland.

We measure our success by the increasing number of Aortic Dissection survivors joining our free support network – currently well over 500.

Our History

The Association began with a small group who organised the first-ever AD Awareness Day UK on 19th September 2016 at the Royal Brompton Hospital in London. As our work and numbers grew, on 18th March 2018 we formally constituted Aortic Dissection Awareness UK & Ireland as the national patient association for AD.

Later in 2018, in partnership with the Royal College of Emergency Medicine, the Society for Cardiothoracic Surgery and Heart Research UK, we launched the highly-successful THINK AORTA campaign, which is now being deployed across the world to save lives in Aortic Dissection.

Our vital work of supporting patients & families affected by AD, giving them a voice and campaigning for better diagnosis, treatment and research continues to grow. Patients are at the heart of what we do. If you would like to help them, join us….

Membership

Membership of the Association is free to patients, relatives, carers and healthcare professionals with an interest in Aortic Dissection. As a voluntary patient association, we rely on a team of dedicated volunteers, many of whom are Aortic Dissection survivors, to do our work. We are funded entirely by the generosity of individual donors and organisational sponsors who share our vision for improving the diagnosis and treatment of Aortic Dissection patients in the UK and Ireland.

Aortic Dissection Awareness Day – 19th September

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 many years, we have recognised the work of The Royal Brompton NHS Trust, the Liverpool Heart & Chest Hospital, Barts Health NHS Trust and the The University of Leicester, BHF Cardiovascular Sciences Research Centre.

Key Projects

We 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.

In addition to our pioneering work in the UK and Ireland on this campaign, it has now gone global, with THINK AORTA US and others to follow.  See the global website:

The NHS England Service Specification for Thoracic Aortic Disease: We are part of the NHS England Working Group developing a new national standard of care for Aortic Dissection patients.

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

National Screening Programme: Our collaboration with the University of Leicester on a research study that will produce the evidence needed to support our request to set-up a UK national screening programme for Aortic Dissection risk.

NICE: Since early 2019 we have been registered stakeholders with The National Institute for Health and Care Excellence and comment on all guidelines and other documents as they affect Aortic Dissection.

UK and Ireland Roll-out:  In 2020 we added specific Country Representatives to our committee for the island of Ireland, plus Scotland and Wales, to ensure that all parts of the UK and Ireland will benefit from our work.

Research Priorities: In December 2020 we attended the first ever workshop of its type, held by the Public Health Improvement group within the UK Department of Health and Social Care and attended by a full range of health professionals involved with Aortic Dissection.   This ground-breaking workshop agreed priorities for Aortic Dissection research in the UK and the results are expected to be published in early 2021.  See the article on the News page.

Our Organisation

We are legally consituted as a Voluntary Unincorporated Association with full visibility of our structure and Constitution, as below.  We may convert in due course to a registered charity but only if that has significant advantages and at the right time.

You can read our Constitution here.

Our Organisation chart: