3.5 million in the UK are affected by a rare condition – that’s 1 in 17 people.
This year’s Rare Disease Day will be on Tuesday 28 February 2023, providing the perfect opportunity to educate others about the impact of rare conditions like Behçet’s on people’s lives, and what can be done to improve care for those affected.
This year the focus of rare disease day is effective coordination of care, and how essential it is to help people living with rare conditions and their families minimise the impact of appointments on their busy lives, and help healthcare professionals to work together effectively to provide high-quality and joined-up care.
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:
- Help Rare Disease UK get a Google Doodle.
- Throughout the day we will be sharing various posts about Behçet’s on our Instagram, Facebook and 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 created versions suitable for Instagram, Facebook and Twitter.
- Share your rare disease story with Rare Disease UK. Find out more on their application form here: https://www.raredisease.org.uk/wp-content/uploads/sites/7/2023/01/Rare-Disease-Day-2023-blog-guidelines.pdf
- 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, and possibly share, your posts. Use the hashtags #RareDiseaseDay and/or #RareDiseaseDay2023 and/or #CareForRare
- Download the Rare Disease Day official social media posts to share on your own pages from here: https://www.rarediseaseday.org/downloads/
- 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 28 February 2023. Find out more and see pictures from last year here: https://www.rarediseaseday.org/downloads/lightupforrare/ Don’t forget to use the hashtag #LightUpForRare
- Attend a Rare Disease Day Parliamentary Reception. Details are here: https://geneticalliance.org.uk/gauk-news/news/rare-disease-day-2023-parliamentary-receptions/
- Watch ‘‘Caring together for Rare Conditions’a new programme co-produced by ITN Business and Genetic Alliance UK. Find out more here: https://geneticalliance.org.uk/gauk-news/news/caring-together-for-rare-conditions-launch/
Many thanks 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