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.
Our global theme for 2022 is Rare is many. Rare is strong. Rare is proud. It reminds us how important it is to come together and connect as a community. It’s an opportunity to share personal stories and acknowledge the challenges for our community members who live with a rare disorder.
ADAM’S STORY – GETTING THE MESSAGE OUT
On Rare Disease Day Adam shares his story, Getting the message out. Haemophilia is considered a rare disease and Adam tells us how he raises awareness about haemophilia in his local community and school. He explains why it is important and how it helps the people around him support him in emergencies and in his everyday life, but without limiting him.
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.
You may have seen some other personal stories about living with very rare bleeding disorders on our social media platforms in the lead up to Rare Disease Day:
We would like to thank Adam, Belinda and Simoni 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.