Voice for the Voiceless
Von Willebrand Disease is the most common inherited bleeding disorder, yet many people — including healthcare providers — have never heard of it. By raising awareness, we’re working to ensure faster diagnoses, better treatment, and greater understanding for everyone affected by VWD.
Awareness changes outcomes. When more people recognise VWD earlier, patients can access answers sooner, avoid preventable complications, and receive better support throughout diagnosis, treatment, and daily life.
A condition this common should not still be this overlooked
Von Willebrand Disease is the most common inherited bleeding disorder, yet many people — including healthcare providers — have never heard of it. By raising awareness, we’re working to ensure faster diagnoses, better treatment, and greater understanding for everyone affected by VWD.
Faster diagnosis matters
When VWD is recognised earlier, people are more likely to get the right investigations, better support, and safer care during surgery, childbirth, injuries, and everyday bleeding events.
Treatment should not depend on awareness gaps
Too many patients are left managing symptoms for years before receiving answers. Improving awareness helps reduce delays and improves access to knowledgeable healthcare support.
Every conversation helps
Awareness does not just inform the public — it helps clinicians, educators, workplaces, families, and wider communities understand that VWD is real, common, and deserving of proper attention.
The data shows why awareness cannot wait
These figures highlight the real-world impact of missed diagnosis, underestimated bleeding symptoms, and delayed access to appropriate treatment. The most important percentages are highlighted clearly below.
Years without answers
16–26+ years Type 1 patients wait an average of 26 years for a final diagnosisThis delay can lead to avoidable bleeding, pain, and long-term complications.
Often dismissed, often disruptive
82% Experience nose or oral bleedingThese “minor” bleeds can still have a major impact on daily life, confidence, and wellbeing.
A major part of the VWD experience
72% Women with VWD report heavy menstrual bleedingThis affects education, work, mental health, confidence, and everyday quality of life.
Pain that may be preventable
71% 1 in 3 live with chronic painThis is often preventable with earlier diagnosis and better treatment access.
How VWD Alliance is helping raise awareness
Awareness takes consistency, visibility, education, and community leadership. We are building momentum through patient-led action across multiple spaces.
Expert-led sessions
We host accessible sessions on VWD topics for patients, families, and supporters across the community.
Clear, accurate resources
We create and share information that helps people better understand VWD and its impact on real life.
Building connection
Virtual and in-person engagement helps people feel less isolated and more supported.
Amplifying stories
We share facts, lived experience, and updates that help bring VWD into wider public conversation.
Improving professional understanding
We want more clinicians to recognise symptoms earlier and feel more confident supporting patients.
Keeping lived experience central
Everything we do is grounded in real experience of living with VWD — because awareness should always reflect the people most affected.
Small actions can create real change
Awareness grows through stories, conversations, shared knowledge, and community action. Here are meaningful ways to help.
Share your story
Personal experience helps others feel less alone and helps the wider world understand what VWD really looks like.
Join our events
Attend webinars, awareness campaigns, and community events to learn, connect, and strengthen visibility.
Spread the word
Follow us on social media and share content with friends, family, schools, workplaces, and healthcare teams.
Educate others
Talk openly about VWD and help build awareness among the people and professionals around you.
Volunteer your time
Support awareness work through outreach, events, lived-experience input, and community-building activity.
Support the mission
Whether by sharing, participating, or helping amplify campaigns, every contribution helps move awareness forward.
Stay connected through webinars, Q&As, and awareness activity
We regularly host webinars, Q&A sessions, and community events. Visit the webinars page for upcoming sessions and recordings, and follow our channels so you never miss a chance to learn or take part.
Watch and learn
Explore sessions designed to inform, empower, and connect patients and families affected by VWD.
Follow and share
- Instagram: @VWD_Alliance
- Facebook: VWD Alliance
- YouTube: VWD Alliance
- Share our posts and help amplify awareness
Awareness starts with one voice — and grows through community.
Follow us, learn with us, attend events, and help more people understand the reality of Von Willebrand Disease. Every action helps make diagnosis faster, care better, and support stronger.
