EHC Von Willebrand Disease Awareness Day 2025: Making The Invisible Visible

For the third consecutive year, the EHC leads the campaign for European Von Willebrand Disease (VWD) Awareness Day on February 1, bringing attention to the challenges faced by patients with VWD. This year’s theme is “Making the invisible visible”.

VWD is an inherited bleeding disorder that affects both men and women – actually, the most common bleeding disorder affecting up to 1% of the population. Despite this, many patients face challenges in receiving a proper diagnosis, accessing treatment, and dealing with lifelong stigma. Especially women, who often go undiagnosed or misdiagnosed for years, despite frequent nosebleeds, excessive bruising, heavy menstrual bleeding, and prolonged bleeding after injuries or surgeries, all of which can significantly impact daily life.

On this important day, we come together to increase understanding and show solidarity with those affected by this rare bleeding disorder. We encourage everyone to learn more, share stories, and educate others about VWD. Greater awareness leads to earlier diagnosis, better care, and ultimately a better quality of life for patients. Together, we can ensure that individuals with VWD receive the care, support, and recognition they deserve.

As part of this initiative, our VWD Committee members wish to share their personal experiences and hopes for the future. Their voices are vital in spreading awareness and encouraging those impacted by VWD. Let’s work together to make sure no patient with VWD feels invisible. ❤️

“The EHC VWD Committee works together to raise awareness, build understanding, and support those affected by the disease — on VWD Day, we work to shine a light on the journey of those living with VWD. Knowledge empowers. Compassion connects.”

Jo Traunter, EHC VWD Committee Co-chair

“Women and girls with a mild or moderate form of VWD rarely receive long-term prophylaxis, which can lead to them being falsely labelled by society as victims of domestic violence because they easily develop long-lasting bruises all over their bodies for no apparent reason.”

Julia Rauscher, EHC VWD Committee Co-chair

“As a mom of two daughters with VWD, I see the impact of their heavy menstruation, the associated uncertainty, and the mental struggle every month. As a mom and member of the EHC VWD committee, I hope that together we can create more and more awareness for VWD and the female-specific problems that may come with it.“

Cathy Verbraeken, EHC VWD Committee Member

“Living with a rare disease like VWD — common, but rarely heard and understood — comes with a unique opportunity. We can transform our challenges into solutions, make life easier for others, and inspire fellow patients and caregivers to do the same. The EHC VWD Committee unites patients, parents, and specialists to raise awareness, educate different groups, and advocate for change where it’s needed most. Be brave, be bold — join the VWD community, both in your country and internationally!”

Baiba Ziemele, EHC VWD Committee Member

“On this day the VWD community demands early access to diagnosis and equal access to treatment. Help us spread the message, reach out to more patients, and get involved in the community. Join us on VWD Awareness Day and give us a voice!“

Laura Quintas Lorenzo, EHC Steering Committee Liaison Member in the EHC VWD Committee