International Rare Disease Day is marked on 28 February with the aim to raise awareness among the general public and decision-makers about rare diseases and the impact they have on patient’s lives.
A disease is defined as rare if it only affects a small percentage of the population, often leading to delayed diagnosis, misdiagnosis and often, as a result, a high level of pain and suffering associated with the disease.
The first Rare Diseases Day took place in 2008 with 18 participating countries and has since grown to include over 100 events across the world.
Community members are encouraged to support the day by:
- Taking part in an interactive social media campaign to show your support
- People can do this by painting their faces to show they are rare and sharing a selfie on social media using the hastag #ShowYourRare. Community members can also add a Facebook frame to their profile picture or follow Rare Diseases Day on Facebook and Twitter
- Organise an event
- Host a meeting, workshop or conference about a rare disease or hold an art, photography or essay writing competition. Host a walk or plan a sports fundraising event
- Become a friend
Sign up to become a friend of Rare Disease Day to show your support of the campaign
- Share your story
Join the movement to raise awareness about rare diseases by sharing your story about living with a disease or your experience of caring for someone with a disease
- Take action locally
Reach out to the local press about your proposed event to honour the day or get a celebrity or politician involved to boost publicity.
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