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In 2025 Rare Disease Day was celebrated worldwide on 28 February to raise awareness and generate change for people with rare diseases.
More than 7,000 different rare diseases have been identified, each affecting only small numbers of individuals. The Rare Disease Day campaign unites this diverse group of people with a single purpose. It works globally towards equity in social opportunity, healthcare and access to diagnosis and therapies for people living with a rare disease.
The 2025 theme of 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.
Rare Disease Day reminds us how important it is to come together and connect as a community. This is an opportunity to share personal stories and acknowledge the challenges for our community members who live with a rare bleeding disorder, including the very rare disorders.
WHAT IS A RARE DISEASE?
In Australia, a disease is considered rare if it affects less than 5 in 10,000 people (i.e., 1 in 2,000).
Around 8% of Australians (2 million people) live with a rare disease.
About 80% of rare diseases are genetic. Diagnosis can often take time because these conditions are complex and doctors do not see them often.1
More than 5,000 Australians have a bleeding disorder that is considered a rare disease.2
Haemophilia is considered rare. Approximately:
1 in 6,000 males has haemophilia A
1 in 30,000 males has haemophilia B
Researchers are still gathering data on how many females are affected by haemophilia.
Some bleeding disorders are very rare.
For example, 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. 3
Sometimes there are more people affected than you might expect. Even though it is a very rare bleeding disorder, there are more than 370 people who have been diagnosed with factor XI (11) deficiency in Australia.2
Sharing personal stories is an important way to enable people with rare diseases to connect. It also helps the wider community to understand better what it is like to live with a rare disease.
You may have seen some personal stories about living with very rare bleeding disorders on our social media platforms in the lead up to and on Rare Disease Day. Many thanks to our community members with rare bleeding disorders who have shared their personal stories.
Read the Being rare story in this issue of National Haemophilia.
Many people with rare diseases 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.
‘Living with a rare disorder can be quite isolating as nobody you know is like you and can understand what everyday life can be like for you. This is why it is important to have a supportive network of people around you – and share with the people who are close to you so they can also understand and support you in all you do in life.’
Allison, who has Glanzmann thrombasthenia
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 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 may be aware of the new and emerging therapies for haemophilia and the difference they make to quality of life but 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.
You can help to raise awareness by sharing the stories of people with rare bleeding disorders through your personal networks.
Do you have a story of your own about living with a rare bleeding disorder you would like to share? Visit the SHARE YOUR STORY section on the HFA website to tell us more.
For more information on Rare Disease Day, visit www.rarediseaseday.org
Haemophilia Foundation Australia acknowledges the Traditional Owners and Custodians of Country throughout Australia, the land, waters and community where we walk, live, meet and work. We pay our respects to Elders past and present and extend that respect to all Aboriginal and Torres Strait Islander peoples.
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