Did you know that 300 million people worldwide are living with a rare disease?
This year’s Rare Disease Day will be on Thursday 29 February 2024, providing the ideal opportunity to raise awareness about rare conditions like Behçet’s.
This year the theme for the day is #StoriesBehindTheStats Although rare conditions are individually rare they are collectively common, affecting 3.5 million people in the UK.
If you’d like to get involved in this year’s activities, here are a few ways you can do so, some of which only take a few minutes:
- Write a blog post for Rare Disease UK. They would like to hear about you, and statistics that come with your condition, and your life in numbers, such as how many medications you take, and how many hospital appointments you have each year. How do all these affect your life?
- Book in an Instagram Story takeover with Rare Disease UK. They are booking slots every Friday starting from Rare Disease Day 2024. Get in touch with them if you would like to take part at rarediseaseday@geneticalliance.org.uk
- Share your photos with Rare Disease UK – they are looking for photos that depict life with a rare condition.
- Throughout the day we will be sharing various posts featuring facts, statistics and personal stories about Behçet’s on our Instagram, Facebook and X (Twitter), and we’d really appreciate it if you could give us a share, like and/or retweet.
- Download and share our diagram of Behçet’s symptoms. https://behcetsuk.org/diagram-of-behcets-symptoms/ We have versions suitable for Instagram, Facebook and X (Twitter).
- Share your experiences of Behçet’s on your social media on the day. It could be a video, image, blog post or just a sentence or two to describe your experiences. When sharing anything on social media for Rare Disease Day, remember to tag us @BehcetsUK so that we see your posts. Use the hashtags #RareDiseaseDay and/or #RareDiseaseDay2024 and/or #StoriesBehindTheStats
- Download the Rare Disease Day official social media posts, banners, profile filters and Zoom backgrounds from here: https://www.rarediseaseday.org/downloads/
- Watch and share the official Rare Disease Day video: https://www.youtube.com/watch?v=zEQ828Lkxac
- Join in the global chain of lights and Light Up For Rare! In an effort of global solidarity, you are invited to light or decorate your home with the Rare Disease Day colours at 7 PM your local time on 29 February 2024. Find out more and see pictures from last year here: https://www.rarediseaseday.org/downloads/lightupforrare/ Don’t forget to use the hashtag #LightUpForRare
- Speak at a Rare Disease UK event. Would you like to share your story at one of their Parliamentary events? They are looking for people to speak in England, Scotland and Wales. Let them know if you would be interested by emailing rarediseaseday@geneticalliance.org.uk.
- Watch and share ‘‘Rare Conditions: The Stories Behind the Stats’, a news-style programme raising awareness of people affected by rare, genetic, and undiagnosed conditions which will launch on Rare Disease Day. Find out more on the Genetic Alliance website.
- Donate to our Instagram fundraiser! We will shortly be launching this with the aim to raise £500 which would help us to continue our important work in supporting those with Behçet’s across the UK. All donations are very much appreciated. To view our fundraiser you will need to look at our Instagram page on your mobile phone (not on your laptop/desktop) where you will see it at the top of our profile.
Thank you for your help! If you have any queries or would like to let us know your plans for Rare Disease Day, email us at info@behcetsuk.org There’s also more information on the Rare Disease UK website