Rare Disease UK  would love you to be part of Rare Disease Day 2021, here’s how you can get involved:
  • Talk to them on social media: The easiest way to take part in Rare Disease Day 2021 is to make sure you are following Rare Disease UK on Twitter, Facebook and Instagram so you can re-share their content. Tag them in your content so they can share it and add it to their 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 Rare Disease UK wants 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 social media channels.
  • Share your story: Rare Disease UK will be sharing stories on social media throughout February. If you would like to make a short video or write a blog  about your experiences get in touch by emailing rarediseaseday@geneticalliance.org.uk.
  • Take part in the social media challenge: Rare Disease UK will be launching a social media challenge asking you to share your rare on Monday 15 February. Keep an eye on social media channels for more details.
  • Virtual Parliamentary Event: As the usual Parliamentary events can’t take a place this year, Rare Disease UK 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: with an exciting line-up 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 Rare Disease UK’s 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

If you would like any further information, please contact the Genetic Alliance UK Policy & Engagement Manager (Wales), Emma Hughes – emma@geneticalliance.org.uk.