Rare Disease Day 2017

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.

Tell your MP about rare diseases

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.

You can download the template here. If you’re not sure who your MP is, you can find out here.

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.


Attend one of our receptions

To mark Rare Disease Day 2017, we will be hosting our annual receptions at the Senedd in Cardiff, the House of Commons in London, and the Scottish Parliament Building in Holyrood. Rare disease patients and their families are invited to join parliamentarians, Assembly Members and others in the rare disease community to mark Rare Disease Day 2017, officially held on 28 February.
Details of the events and links to event pages are below. Please be aware that places are limited for all these events, and we are already at capacity for the Westminster Reception (although you are welcome to sign up to the waiting list if spaces do become available).

Reception at the Senedd
6-8pm, Tuesday 14 February 2017
For more information and to sign up, click here.

Westminster Reception
1-3pm, Tuesday 28 February 2017
This event is currently at maximum capacity, however you are welcome to sign up to our waiting list. For more information, click here.


Holyrood Reception
6-8pm, Wednesday 1 March 2017
For more information and to sign up, click here.

Join our Instagram photo challenge!

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

  1. Follow @rarediseaseuk on Instagram.
  2. Take a photo  every day from 1-28 February based on the themes provided below. Alternatively you can just get involved on the days that suit you!
  3. Post your photo to Instagram, using the hashtag #RareDiseaseDay.
  4. Tag @rarediseaseuk in your post so we can re-post photos.
  5. Keep an eye on our Instagram,  Facebook and Twitter pages to see what other people are posting.



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