Rare Disease Day is an annual event which provides the rare disease community the opportunity to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives. It is recognised in countries around the world, and this year will be held on Tuesday 28 February 2017.
The day is coordinated by Eurordis at an international level and by Rare Disease UK at a national level. Since 2009 we have coordinated awareness raising parliamentary events throughout the UK and a campaign throughout February.
Below you can find details of the ways you can get involved in actions to raise awareness about rare diseases for Rare Disease Day 2017.
Your MP is elected to represent you. Telling your MP about issues that affect you can be a really powerful way to make change and influence decisions about rare diseases. We have put together a letter template so you can write to your MP ahead of Rare Disease Day 2017 to raise awareness about rare diseases and tell them about ways they can support people with rare diseases in parliament.
If you are attending the event, you can send an e-mail or letter to your MP using this template.
If you would like to contact your MP after Rare Disease Day, please use this template.
6-8pm, Wednesday 1 March 2017
For more information and to sign up, click here.
In the run up to Rare Disease Day 2017, we’re asking all our supporters to take part in a 28-day photo challenge on Instagram to help raise awareness of living with a rare disease.
Rare Disease Day is an international event to raise awareness about rare diseases and their impact on patients. Our photo challenge is open to all our supporters and there will be prizes for the best photos and most committed participants!
From 1-28 February, we’d like everyone to post one photo a day based on the themes we’ve provided below. If you can't manage every day, feel free to participate on the days that most appeal to you.
Let's get #RareDiseaseDay trending and start a conversation about rare diseases!
How to get involved