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We would love for you to be part of Rare Disease Day 2021, here’s how you can get involved:

  • Come and talk to us on social media: The easiest way to take part in Rare Disease Day 2021 is to make sure you are following us on Twitter, Facebook and Instagram so you can re-share our content. Tag us in your content with #RareDiseaseDay so we can share it and add it to our social media stories. Remember to always use the hashtags
  • Rare Reach Festival: The themes for Rare Disease Day this year are: Rare is many; Rare is strong; Rare is proud. As part of the Rare Reach Festival we want you to share your old and new social media content that helps demonstrate these themes – don’t forget to use the relevant hashtags!
  • Watch and share the UK’s official Rare Disease Day video launching on Friday 5 February on all our social media channels.
  • Share your story with us: We will be sharing stories on our social media throughout February. If you would like to make a short video or write a blog for us about your experiences get in touch by emailing [email protected].
  • Take part in our social media challenge: We will be launching a social media challenge asking you to share your rare on Monday 15 February. Keep an eye on our social media channels for more details.
  • Have a play with our Instagram filter: We have a special instagram filter coming for Rare Disease Day so make sure you pop over to our Instagram account on Monday 22 February and check it out.
  • Virtual Parliamentary Event: As we can’t hold our usual Parliamentary events this year, we will be hosting a virtual event to hear from people affected by rare conditions, explore the new UK Rare Diseases Framework which promises to improve the lives of all those affected by rare conditions and hear from health ministers from across the UK about how they are planning to implement the Framework in their nation.
  • Twitter takeover: We’ve got an exciting lineup including representatives from NHS England, the Association of British Pharmaceutical Industry, MP Liz Twist and individuals affected by rare conditions who will be hosting Twitter takeovers in the week leading up to Rare Disease Day. Make sure you are following our Twitter account so you can be part of the conversation.
  • Share the Rare Disease Day assets: Download the Rare Disease Day 2021 social media assets to use on your own social media accounts

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© Genetic Alliance UK 2018

Rare Disease UK is a campaign of Genetic Alliance UK.


Genetic Alliance UK registered charity numbers: 1114195 & SC039299.
Registered company number: 05772999



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