Aortic Dissection Awareness UK & Ireland voted Best Specialist Patient Support Charity UK 2023
Posted on 30th June 2023
Fantastic news as our national patient charity is awarded the accolade of Best Special Patient Support Charity - UK - 2023 for our dedicated work helping patients and families affected by Aortic Dissection.
The charity has worked tirelessly, supporting our patients, families and carers in a personal way, caring for and empowering those affected, as well as driving change, enabling research and raising awareness of this disease.
Founded by a small group of survivors in 2016 and funded entirely by generous donors, Aortic Dissection Awareness UK&I is now the national patient charity, giving a voice to patients and families affected by the condition. We offer free membership to patients, relatives, carers and healthcare professionals with an interest in Aortic Dissection.
Part of our mission is to improve survival outcomes. It is imperative that affected individuals receive prompt diagnosis and are quickly transferred to a specialist centre for treatment.
Our charity has three main goals:
Firstly, we strive to provide vital information and support for patients and families affected by Aortic Dissection, through resources such as the online Aortic Dissection Buddies UK support group and our definitive handbook to the condition: ‘Aortic Dissection: The Patient Guide.’
Secondly, we work with healthcare providers to improve diagnosis and treatment of the condition. To facilitate this work, we created and lead the life-saving, global THINK AORTA campaign, which is raising awareness and improving diagnosis around the world. Since its launch in 2018, our high-impact THINK AORTA poster has been translated into the native language of 50% of the world’s
Thirdly, we partner with researchers to bring new insights and discoveries that can improve future care for patients. We have successfully agreed on a set of national research priorities with the UK Department of Health, which are now being used to guide decision making on Aortic Dissection research proposals. The 2023 Natiional Adult Cardiac Surgery Audit (NACSA) reported a 68%
increase in the number patients receiving emergency Aortic surgery between 2014 and 2022 and attributed this to increased disease awareness and THINK AORTA.
We are led by patients, for patients. Our Chair Gareth Owens and Vice-Chair Haleema Saadia are both Aortic Dissection survivors. All of our seven Trustees have lived experience of the impact of this disease as a patient or as a first-degree relative of someone who had an Aortic Dissection. When he was just 11 years old, Gareth’s father passed away due to the condition. Gareth lived with an inherited genetic risk and suffered an Aortic Dissection himself in 2016, when his life was saved by aortic surgery at a leading specialist centre. Aged just 21, Haleema had an Aortic Dissection during pregnancy and extensive emergency surgery, which saved both her and her daughter.
Gareth and Haleema are privileged to lead a large, dedicated team of volunteers. Their lived experience enables then to understand and advocate for other patients and their families.
As a result of the incredible work it does, Aortic Dissection Awareness UK & Ireland has been awarded Best Specialist Patient Support Charity in the Non-Profit Organisation Awards 2023.