Today is Rare Disease Day. It’s a day when we join together worldwide to raise awareness about what it is like to live with a rare health condition. While haemophilia is rare, some other bleeding disorders are even rarer. Today we put the spotlight on the range of bleeding disorders and the particular issues for people living with very rare disorders.
Rare Disease Day is also an effort to work globally towards equity in social opportunity, healthcare and access to diagnosis and therapies for people living with a rare disease.
The 2023 theme of Rare is many. Rare is strong. Rare is proud 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 disorder.
Adam tells his story of living with Type 3 VWD He explains what it was like to grow up with a severe and rare form of VWD and what he has learned about becoming independent, participating and being active.
READ ADAM’S STORY
VERY RARE BLEEDING DISORDERS
Some bleeding disorders are very rare, such as rare clotting factor deficiencies, inherited platelet function disorders and very rare types of VWD. 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.
Many people with rare diseases speak of feeling isolated. Many have never met or heard of another person with their condition. Sharing personal stories is an important way to help people with rare diseases feel connected. It can also help the wider community to understand better what it is like to live with a rare disease.
Sharing personal stories is an important way to help people with rare diseases feel connected. It can also help the wider community to understand better what it is like to live with a rare disease.
You may have seen some other personal stories about living with rare bleeding disorders on our social media platforms in the lead up to Rare Disease Day. Some live with very rare disorders, for example:
Our thanks to Adam, Belinda, Simoni, Shauna and our other community members with haemophilia and other rare bleeding disorders for sharing their personal stories.
HOW CAN YOU HELP?
If you would like to help the effort to raise awareness today, you may like to share these personal stories through your personal networks.
And if you have a personal story to share, please don’t hesitate to contact us through SHARE YOUR STORY. We would love to hear from you!
For more information on Rare Disease Day, visit www.rarediseasedayaustralia.com.au.