28 February is Rare Disease Day – a worldwide event to raise awareness and generate change for people with rare diseases.
I invite you to join us in our awareness campaign as we take the opportunity to share personal stories and acknowledge the challenges for our community members who live with a rare bleeding disorder.
The theme More than you can imagine highlights that there are more rare bleeding disorders, more people affected, and more stories from people in our community than we might realise.
Two million Australians – 300 million people worldwide – are living with a rare disease. Rare Disease Day reminds us how important it is to come together as individuals and connect as a community.
Stories from our community
What is a rare disease? 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. 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 370 people who have been diagnosed with factor XI (11) deficiency in Australia.
- Allison’s story (glanzmann thrombasthenia)
- Elizabeth’s story (glanzmann thrombasthenia)
- Belinda’s story (factor X deficiency)
- Adam’s story (type 3 VWD)
- Jenny’s story (acquired haemophilia)
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. Women and girls with haemophilia also talk of not being believed because of the common assumption that only males have haemophilia.
When rare diseases are very rare and numbers are small, this can mean that the development of new and highly effective treatments is slow. There may even be no treatment that specifically targets that condition. For example, you are most likely aware of the new and emerging therapies for haemophilia and the difference they make to reducing bleeds and quality of life – but at the same time there is no specific clotting factor concentrate to treat factor V (5) deficiency and fresh frozen plasma may be used for treatment instead.
Through 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.
