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28 FEB. 2026

2026 World Rare Disease Day

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World Rare Disease Day 2026
On the World Rare Disease Day, we would like to focus on what progress in the diagnosis and care truly means for people living with von Willebrand disease.

👧 👩‍🦰 🧑‍🦳 Behind the science and the data, there are individual journeys.

🔎 Through the experiences of three patients of different ages and profiles, Emilie, Jessica & Charles, let’s discover what people with von Willebrand disease may face during their pathway.

✅ These stories remind us that early and more accurate diagnosis, combined with personalised management, can make a meaningful difference, not only in clinical outcomes, but in the ability to live life more fully.

🙏Our sincere thank you to the patient organisation AHVH, Association de l’hémophilie von Willebrand et autres pathologies de la coagulation, for its support in raising awareness about von Willebrand disease and thank you to all European patient associations dedicated to rare diseases.

💪Together, we continue building hope.

  • 100 years of von Willebrand disease, "Building hope together", Patient Stories: Across all ages and stages of life, progress in diagnosis and care is helping people living with von Willebrand disease regain confidence and the freedom to enjoy life again.

"Living with bleeds from an early age" discover Emilie's testimony :

"Living with bleeds from an early age", Emilie, 12 years, von Willebrand disease type 2 . I was diagnosed with von Willebrand disease when I was one year old. The course of my life has been punctuated by heavy nose and mouth bleedings and, since puberty, by severe menorrhagia. I had menstrual bleeding lasting up to 14 days a month, which caused anaemia and extreme fatigue. This heavy bleeding meant that I had to miss several days of school every month, severely affecting my quality of life.
Emilie : "Getting my life back" Since appropriate care was provided by my doctor, my monthly bleeding has been shortened to 6 days and my anaemia is under control. I am now able to attend school full time, and my life has become ‘normal’ again.

"Years of symptoms before answers", Jessica 26 years old, living with von Willebrand disease type 2A

"Years of symptoms before answers", Jessica, 26 years old, von Willebrand disease type 2A For as long as I can remember, I suffered from frequent nosebleeds and heavy periods, which led to the development of anaemia. My monthly bleeding lasted 20 days, forcing me to take time off work as I was constantly anaemic and tired.
Jessica, Stability, energy and renewed confidence: Now, I only bleed for 3 days a month, I no longer have anaemia, and I am able to enjoy my work again. My condition has been stable for 3 years since my doctor has given me appropriate care.

"When bleeding took over my daily life ", Charles 79 years old

When bleeding took over my daily life, Charles 79 years old, von Willebrand disease type 2A Following a surgery on my urethra, I noticed blood in my urine. The problem became persistent and the bleeding severely made me anaemic. The tiredness that accompanied this anaemia meant that my daily routine was completely compromised.
Charles, Back to living fully : Since appropriate care, I have had no further bleeding episodes and my anaemia is controlled. I am no longer tired and I can enjoy life again.