Rare Disease Day

When? Thursday 28th February 2019

Why? To raise awareness of rare diseases and the impact they can have upon patients.

This Year’s Rare Disease Day Theme? Bridging the gap between health and social care.

 

How YOU can get involved

  1. Do an Event to #ShowYourRare!

This Rare Disease Day, we would like YOU to #ShowYourRare by doing an event!

One way to #ShowYourRare at an event is with face paints, which can help show your solidarity with other rare disease patients. To see more information on why face painting is a good idea for Rare Disease Day, see the following link: https://www.rarediseaseday.org/article/show-your-rare

Some suggestions for events with your war paint include:

  1. Wear your warrior paint on a sponsored walk – you could even do this with your work colleagues at lunch!
  2. Organise a face painting session at your school.
  3. Do some bag packing with your war paint. (Top Tip: get in contact with your local supermarket’s community champion to organise a bag packing session).
  4. Get your running or exercise group to complete their workout with their warrior paint – think your own version of a colour run!
  5. Organise a bake sale at your church, school, workplace or in your living room, with multi-coloured cakes to show that everyone is unique!

Doing an event to #ShowYourRare can help us raise awareness of Inherited Metabolic Disorders and by using your event to raise money for Metabolic Support UK, you can help us to provide vital support to patients and families with Inherited Metabolic Disorders. Without your support, we wouldn’t be able to provide the services we do.

 

  1. Share your Story

Sharing your story is key to helping us raise awareness of Inherited Metabolic Disorders. Change your profile picture on social media to use the Rare Disease Day frame (you can add the frame to your profile picture by choosing “Add Frame” when updating your profile picture) and share your story with this new picture, or post a picture on social media along with your rare disease story.

At Metabolic Support UK, we have created some posters for you to download, on which you can write “Why you support Rare Disease Day” and “Why you want to #ShowYourRare” (see the bottom of this page to download these posters).

 

  1. Join our Communities

Having someone to talk to, who knows exactly what you’re going through, can be so important when you live with a rare disease. Here at Metabolic Support UK, we run two peer support programmes: one for adults, parents and families, who live with an Inherited Metabolic Disorder, and one for young people aged 12-18, who live with an Inherited Metabolic Disorder.

This Rare Disease Day, why not commit to connecting yourself with others, who know exactly what you’re going through.

To join our peer support programme, Metabolic Connect, for adults, parents and families with Inherited Metabolic Disorders, please visit: https://www.metabolicsupportuk.org/metabolic-connect/

To join our young people’s peer support programme, NextGen, please visit: https://www.facebook.com/groups/370842740126921/?source_id=165080137622571 or contact Sally, our NextGen Project Officer, on sally@metabolicsupportuk.org or 0845 241 2173.

  1. Make a Promise to #ShowYourRare this Year

Supporting Rare Disease Day is so important to helping us raise awareness of rare diseases. But we don’t just want to just encourage you to #ShowYourRare on Thursday 28th February, we want to encourage you to find opportunities throughout the year to #ShowYourRare! For example, why not make a promise on Rare Disease Day to sign up to a race to raise money and awareness for Metabolic Support UK? Or you could plan when you want to organise a coffee morning to raise awareness. Whatever you want to do, consider making a pledge on Rare Disease Day on how you want to #ShowYourRare this year! You can also download our promise poster and let us know how you plan to #ShowYourRare this year.

For some fundraising inspiration, please see the following page: https://www.metabolicsupportuk.org/fundraise-for-us/

 

Please click below to download your customisable Rare Disease Day Metabolic Support UK posters. 

Rare Disease Day Posters

 

We hope you have great fun raising awareness about Rare Disease Day this year and that, together, we can help raise more awareness about rare diseases!