Introducing the Vascular Voice Network
Introducing the Vascular Voice Network
Vascular disease is a significant health concern, accounting for 40% of deaths in the UK, and impacting many through rare and common conditions that present vascular symptoms. Despite ongoing scientific advancements in understanding the genetic foundations of these conditions, there’s a lack of formal channels for sharing critical research and patient experiences across the rare vascular condition community.
Hereditary Brain Aneurysm Support, with the kind support of Genomics England, has been exploring a potentially new and exciting Vascular Voice Network, a collaborative platform dedicated to supporting those affected by vascular conditions. Our goal is to establish an independent group which unites representatives from rare conditions and common diseases with vascular symptoms to share research, best practices, and patient experiences.
The proposed Vascular Voice Network seeks to bridge this gap by uniting diverse, rare and common condition organisations around common vascular symptoms and challenges. We’re excited to start a discussion with vascular condition leaders and stakeholders to potentially build a community to learn, discover and advocate for those affected by vascular disease by putting their voices and experiences at the heart of all we do.
Our core principles are:
1. Commonality: Focusing on shared vascular symptoms and challenges.
2. Collaboration: Welcoming a broad and diverse membership and building a community.
3. Care & Communication: Building relationships for better patient outcomes.
4. Clinical & Scientific Research: Providing a proactive space for research and knowledge sharing.
Save the date:19th September 2024
Join us as we start to form the network and have your say in how it could be useful for your rare condition or common disease community. Our first meeting is on 19th September, supported by Genomics England, both online and at their Canary Wharf offices.
If you’re involved with a rare condition organisation or another disease charity that deals with vascular symptoms, please email us at support@hbasupport.org for more details.
Working in partnership
