28 February is Rare Disease Day – a worldwide event to raise awareness and generate change for people with rare diseases.
Join us as we take the opportunity to share personal stories, acknowledge the challenges for our community members who live with a rare bleeding disorder and advocate for equity.
The theme More than you can imagine highlights that more people live with a rare disease than we realise – 2 million Australians and 300 million people worldwide – and that we can come together to achieve change.
On Rare Disease Day we strive for equity in social opportunities, healthcare, and access to diagnosis and therapies for people living with a rare disease.
Equity means promoting fairness through treating people differently, depending on their need. In 2026 the Rare Disease Day Campaign calls for action to ensure people living with a rare disease have the same opportunities to fully participate in family life, work, study and social activities.
What is a rare disase?
A disease is considered rare if it affects less than 1 in 2,000 people.
Haemophilia is rare, but some bleeding disorders are very rare.
Factor X (10) deficiency only affects 1 in a million people. Overall, von Willebrand disease (VWD) is not considered rare: it is estimated that 1 in 1,000 people or more have a form of VWD that will need medical treatment during their lifetime. However, Type 3 VWD is the rarest form of von Willebrand disease, occurring in 1 in 500,000 people in countries like Europe and the USA.
Sometimes there are more people affected than you might expect. Even though it is a rare bleeding disorder, there are more than 390 people who have been diagnosed with factor XI (11) deficiency in Australia.
Stories from our community
“Treating my bleeding disorder as an open topic for conversation has ensured those around me were aware of what help I may need.” – Shauna, VWD type 3
Members of our community share their experience living with bleeding disorders, including factor X deficiency, Glanzmann thrombasthenia, VWD type 3 and severe haemophilia.
- Simoni & Javonte (VWD type 3 and severe haemophilia A)
- Carly’s story (glanzmann thrombasthenia)
- Bel’s story (factor X deficiency)
- Shauna’s story (VWD type 3)
- Allison’s story (glanzmann thrombasthenia)
- Jenny’s story (acquired haemophilia)
Do you live with a rare bleeding disorder? Add your voice – share your story.
Why raise awareness?
Many people with rare bleeding disorders speak of feeling isolated. They may never have met another person with their condition. If they are the first in their family with the condition, it may have taken a long time for them to be diagnosed.
Mistaken beliefs in the community can also be painful – such as, that your parents must have been closely related for you to have a rare genetic bleeding disorder. Women and girls with haemophilia also report not being believed because of the common assumption that only males have haemophilia.
With very rare diseases where numbers are small, the development of new and highly effective treatments can be slow. There may even be no treatment that specifically targets that condition. For example, although there have been big steps forward in innovative haemophilia therapies, there is not yet a specific clotting factor concentrate that is suitable to treat factor V (5) deficiency and fresh frozen plasma may be used for treatment instead.
By sharing their stories and experiences, we can shine a light on the challenges our community faces and help initiate change.
How can you help?
You can help to raise awareness by sharing the stories of people with bleeding disorders through your personal networks, and adding your voice to ours on social media.
If you have a story about living with a rare bleeding disorder you would like to share with us, click here to tell us more about your story.
