Charitable organisations and patient advocacy groups working across rare and common disease areas of vascular health are the foundation of our mission. Please scroll down to access information and links to the Vascular Voice Network core organisation websites:
ACTA2 Alliance
Mission: International patient organization advocating for, supporting, and connecting individuals and families affected by ACTA2 mutations, including Multisystemic Smooth Muscle Dysfunction Syndrome (MSMDS).
Website Link: ACTA2 Alliance ∙ Foundation for Multisystemic Smooth Muscle Dysfunction Syndrome
Annabelle's Challenge
Mission: Annabelle’s Challenge is the UK’s only charity dedicated exclusively to Vascular Ehlers-Danlos Syndrome (Vascular EDS), a rare and life‑limiting genetic disorder. Its mission is to raise awareness, fund vital research and provide meaningful support for patients and families living with vascular EDS.
Website Link: Welcome to Annabelle's Challenge Vascular EDS Charity
Aortic Dissection Awareness UK & Ireland: The Patient Charity
Mission: To save lives by improving diagnosis of Aortic Dissection and ensure that every family affected by this disease has access to the best available information, care and support.
Website Link: Aortic Dissection Awareness UK & Ireland | The Patient Charity
Aortic Hope
Mission: To serve a community of patients, survivors, and caregivers living with an aortic disease. To Spread Hope, Create Awareness, and Provide Support during the recovery and management of aortic disease.
Website Link: Aortic Hope
The British Heart Foundation Clinical Research Collaborative
Mission: to support the planning and delivery of clinical research in heart and circulatory disease by providing the infrastructure to facilitate, enhance and coordinate the research activity of existing cardiovascular and surgical societies.
Website Link: BHF Clinical Research Collaborative
Cambridge Rare Disease Network (CamRARE)
Mission: To unite patients, advocates, experts and leaders to address the challenges faced by people affected by rare diseases. By sharing knowledge and experience, and working together, the journey towards better diagnosis, treatment and support for patients and their families will be smoother and more certain.
Website Link: Cambridge Rare Disease Network
Cavernoma Alliance UK (CAUK)
Mission: To provide support and information for all those affected by cavernoma including friends, family, carers and professionals.
Website Link: Cavernoma Alliance UK
Cavernoma Ireland
Mission: To help people living in Ireland who are affected by cavernoma, including friends, family, carers and professionals.
Website Link: Cavernoma Ireland
Ehlers-Danlos Support UK
Mission: To be the voice of the EDS and HSD community in the UK. To bring together people with EDS and HSD in the UK to equitably access diagnosis, treatment and care by raising awareness, offering support, and building knowledge.
Website Link: Ehlers-Danlos Support UK
Gene People: The Genetic Conditions Support Network
Mission: To improve the lives of individuals and families affected by genetic conditions.
Website Link: Gene People
Hereditary Brain Aneurysm Support
Mission: To support people affected by brain aneurysms and families with increased or hereditary risk in the UK.
Website Link: HBA Support
International Heart Spasms Alliance (IHSA)
Mission: To support those affected by unseen heart issues. IHSA serves both the patient and medical communities by educating, informing, and enlightening them to help achieve earlier diagnoses, better treatments, and support research into these conditions.
Website Link: International Heart Spasms Alliance
Marfan Trust
Mission: To provide support and medical guidance to those affected by Marfan syndrome and their families, to provide educational literature on Marfan syndrome and all its aspects to the medical profession and the general public, thus raising awareness of the condition; and to fund medical research projects that aim to aid the diagnosis and treatment of Marfan syndrome patients.
Website Link: Marfan Trust
The Aortic Dissection Charitable Trust (TADCT)
Mission: To unite patients, families and the medical community in a shared goal of improving diagnosis, increasing survival and reducing disability due to aortic dissection.
Website Link: The Aortic Dissection Charitable Trust
The Ehlers-Danlos Society
Mission: To advance and accelerate research and education in Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD). We support the development of effective and equitable EDS and HSD therapies and work collaboratively to improve the lives of individuals affected by EDS and HSD.
Website Link: The Ehlers-Danlos Society
The Marfan Foundation
Mission: To drive research, education, and support – and build community – to improve outcomes, save lives, and empower all people to thrive who are living with Marfan, Loeys-Dietz, Vascular Ehlers Danlos syndromes and related genetic aortic and vascular conditions.
Website Link: The Marfan Foundation
The Neurological Alliance
Mission: To unite and empower people affected by neurological conditions and our member organisations to influence health and care policy in England, so it reflects real-life experiences, ensuring that everyone affected by a neurological condition can access the support they need.
Website Link: The Neurological Alliance
UK Vascular Research Patient and Public Involvement and Engagement (PPIE) Registry
Mission: To lead and facilitate the involvement and inclusion of the patient and public voice in UK vascular research study design and oversight.
Website Link: UK Vascular Research PPIE Registry