Our Core Aims
At the VWD Alliance, our work is guided by four core aims that reflect the needs and experiences of people living with Von Willebrand Disease. Everything we do is focused on building understanding, strengthening support, and creating meaningful change for future generations.
Community
No one should go through their VWD journey alone. Connect with people who understand, share experiences, and find support in a patient-led space.
Raising Awareness
We shine a light on VWD so more people are seen sooner, diagnosed earlier, and understood better — by the public and by healthcare professionals.
Education
Clear, accessible information for patients, families, and healthcare professionals — helping people understand VWD and advocate with confidence.
Research
Explore active studies, surveys, and clinical trials that are helping move diagnosis, treatment, and long-term care for VWD forward.
Voice for the Voiceless
VWD Alliance is a patient‑led movement giving power to the stories that have been overlooked for generations.
We exist to ensure every person living with Von Willebrand Disease is seen, heard, and understood — no longer dismissed, misdiagnosed, or left to navigate this condition alone.
We amplify lived experience, challenge silence, and push for a future where care is equitable, awareness is universal, and every voice carries weight.
Patient‑led. Purpose‑driven. United for change. We are the Voice for the Voiceless.
Latest News & Updates
Recent stories, announcements, and updates from across the VWD Alliance community.
New cause found for VWD
Scientists at Erasmus University Medical Center discovered that some cases of VWD may be linked to problems in the cellular secretion pathway rather than defects in the VWF gene itself.
New VWD Alliance Posters
New posters are being sent to Haemophilia Treatment Centres across the UK to help improve visibility and awareness of Von Willebrand Disease.
EHC Annual Conference symposium
VWD Alliance Co-Founder and Treasurer Sunny Maini spoke on patient journeys and the future of VWD care at the EHC Annual Conference symposium.
Built by patients. Powered by community.
Whether someone is newly diagnosed, still searching for answers, or ready to help drive change, VWD Alliance gives them a place to belong and a reason to keep moving forward.