Rare Disease Day was celebrated worldwide on 28 February 2026 to raise awareness and generate change for people with rare diseases.
Globally more than 7,000 rare diseases have been identified, but each rare disease affects only small numbers of individuals. Diagnosis and access to appropriate treatment and care can be slow and challenging. Rare Disease Day unites this diverse group of 300 million people worldwide in a community with a single purpose.
Rare Disease Day strives for equity in social opportunities, healthcare, and access to diagnosis and therapies for people living with a rare disease.
The 2026 theme of More than you can imagine highlights that there are more people with rare diseases than we realise and many more opportunities in life for people with rare bleeding disorders – if they have access to support when they need it.
Rare Disease Day reminds us how important it is to come together and connect as a community. We join together to share personal stories, acknowledge the challenges for our community members who live with a rare bleeding disorder and advocate for equity.
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 5,200 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 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.
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.(3,4)
Sometimes there are more people affected than you might expect. Even though it is a very rare bleeding disorder, there are more than 390 people who have been diagnosed with factor XI (11) deficiency in Australia.(2)
Why is the Rare Disease Day campaign striving for equity?
Equity means promoting fairness through treating people differently, depending on their need.
In 2026 the Rare Disease 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 does that look like?
You can see this in the examples of special arrangements negotiated for Grace and Alan to participate at university and school. Adam also gives an example of how Scouts enable children with bleeding disorders to participate in mainstream activities.
Grace is a teenager with Glanzmann thrombasthenia, a very rare inherited platelet function disorder. Managing school so that she can participate as fully as possible, it has been important to work with the school to align what everyone thinks is acceptable. For Grace, this this has been very positive – streamlining her treatment so she doesn’t feel like she is missing out on her classes or feeling like ‘the odd kid who is sitting there with an icepack’. For example:
^ A red flag on her file and emergency plans and strategies in place
^ An ice pack in the staff freezer with her name on it
^ Quiet places she can go to ice or treat her bleed or injury
^ A first aid kit in Grace’s bag and a first aid kit for her in the office.
Alan has severe haemophilia. In the week before the start of his course, Alan spoke with his university’s disability team to discuss his haemophilia and what could be done to assist him. This is a confidential service that will talk with you about your needs and what they might be able to put in place to give you the best chance at success. For Alan this talk lead to access to a room where he could treat himself privately during the semester, and a private room for treatment during exams.
Adam has VWD type 3. He describes how the supportive approach of Scouts enabled him to join in the fun and challenge of adventure activities with others of his age.
‘I joined Scouts at a very young age, which was where I got my love and interest in doing adventurous outdoor activities – bushwalking, sailing, abseiling, rock climbing, caving, canyoning, all that sort of thing. Activities you would not normally think you could do. Scouting has been really good because it’s about responsible risk taking. It gave me a chance to be part of the mainstream and develop a level of resilience that helped me to get through those early years.’
Treatment equity is a constant challenge. 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.
Sharing personal stories is an important way for people with rare diseases to connect. It also helps the wider community to understand what it is like to live with a rare disease.
You may have seen some personal stories for Rare Disease Day on our social media platforms. We are grateful to our community members with rare bleeding disorders who have shared their experiences and strategies for living well.
In this issue of National Haemophilia we feature Carly’s story of living with Glanzmann thrombasthenia (My platelets are like bricks without cement) and Simoni and Javonte speaking in the Factored In youth section about ‘being blessed in a different way’.
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 report not being believed because of the common assumption that only males have haemophilia.
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
1. Australian Government. Department of Health. What we’re doing about rare diseases. Accessed 11 February 2026
2. Australian Bleeding Disorders Registry (ABDR) Annual Report 2023-2024. Canberra: National Blood Authority, 2024. Accessed 11 February 2026
3. Orphanet: the portal for rare diseases and orphan drugs. Accessed 11 February 2026
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