About The VVN
A Pathway to Information for Patients and Professionals
We are a brand new open platform focused on collaboration and partnership, not competition. We want to be a space where the voices involved in rare and common vascular conditions carry equal weight.
We will strive to be a connecting point between people, researchers, partner organisations, and systems throughout the vascular landscape. Together we will become a learning community that brings lived experience into dialogue with developing science.
We are not:
- A support group or helpline
- A single-issue or condition-specific campaign
- A passive network
We are here to act, question, inform, and connect.
Why Now?
Vascular conditions account for 40% of deaths in the UK and contribute to countless health burdens—often silently, and across a range of illnesses. While progress is being made in the lab and clinic, there’s a clear lack of joined-up thinking across patient support, research efforts and public understanding.
Rare disease groups often find themselves siloed from larger condition charities. Researchers may not be able to access lived experience in real time. Patients are left navigating an invisible system of disconnected support. And clinicians struggle to signpost their vascular patients to support. The Vascular Voice Network aims to change that.
What We Stand For
The Vascular Voice Network is a unified platform dedicated to bridging gaps in vascular health, research, and patient advocacy. Rooted in the principles of commonality, collaboration, care, and scientific research, it aims to bring together diverse stakeholders—including rare disease organisations, medical experts, and patient groups—to share knowledge and drive meaningful advancements.
By recognising the shared vascular symptoms across different conditions, the network fosters collective learning, ensuring that critical discoveries, clinical best practice and patient experiences are not lost in isolated efforts.
Through an inclusive and equitable approach, it provides a space where organisations can work side by side, amplifying their reach and impact while supporting education, awareness, and research.
Our Commitment
Beyond collaboration, the Vascular Voice Network is committed to strengthening relationships between researchers, charities, clinicians and affected communities, ensuring that patients and families receive better outcomes through improved communication and shared learning.
It offers researchers, scientists, and biotech companies a proactive environment to engage with stakeholders, ask critical questions, and contribute to a deeper understanding of vascular conditions across the full spectrum of disease.