Rare Disease Day 2021

Rare Disease Day 2021 will take place on Sunday 28 February.

It is a chance to raise awareness amongst the general public and decision-makers about rare conditions and their impact on people’s lives.

This year, in light of Covid-19, it will be harder than ever to ensure the voices of the UK’s rare community are heard so the Rare Disease Day team have various activities planned to help amplify them. We’d love your help to do this.

• The easiest way to take part in Rare Disease Day 2021 is to make sure you are following the page on Twitter, Facebook and Instagram so you can re-share their content.
• 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 share your old and new stories and posts that help demonstrate these themes – don’t forget to use the relevant hashtags!
• We’ll be sharing the UK’s official Rare Disease Day video launching on Friday 5 February on our social media channels.
• Check out the special instagram filter coming for Rare Disease Day on Monday 22 February.
• Virtual Parliamentary 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 lineup includes 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 the Twitter account so you can be part of the conversation.

Here at Action Duchenne we will be hosting a special Rare Disease Day themed Duchenne Science LIVE on our brand new YouTube channel.