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Ways to Get Involved in Rare Disease Day 2023!

Posted: 09.01.23

Rare Disease Day is the globally-coordinated movement on rare diseases, working towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease. Since its creation in 2008, Rare Disease Day has played a critical part in building an international rare disease community that is multi-disease, global, and diverse– but united in purpose.

Though Rare Disease Day is patient-led, everyone, including individuals, families, caregivers, healthcare professionals, researchers, clinicians, policy makers, industry representatives and the general public, can participate in raising awareness and taking action today. There are lots of different ways to get involved in Rare Disease Day. Check out some of the suggestions we have collected below!

Share your story

You can be a part of Rare Disease Day 2023 by sharing your story on the Rare Disease Day webpage, and become a Rare Disease Day “Hero”. You can write about your experience and add photos or a video testimonial.  EURORDIS may share your story on their social media as we as their webpage, helping to raise awareness of rare disease day. Learn more here.

Share some snaps

Make sure to send us some photos of what you are up to on this year’s Rare Disease Day. Whether you take part in a fundraiser, wear your RDD colours to work, or light up your home, we would love to hear from you.  Send some snaps of what you are doing to, we’d be happy to share them on social media with the rest of the community.

Light up for Rare 

This Rare Disease Day we are once again hoping to create a global chain of lights to show the solidarity of the worldwide rare community. For Rare Disease Day we are hoping the NPU community will light up their windows at  19:00 on Rare Disease Day, and join a network of rare disease organizations and communities across the globe. You can find out more here. You could even suggest to the local authority they light up a monument in your local area, and help to reach an even wider audience. Make sure to get in touch with NPUK about what you are up to.

Use the Rare Disease Day social media package 

The Rare Disease Day social media package has lots of eye-catching graphics and tools to use, including Instagram filters and Facebook profile frames. Using these materials helps others to learn more about Rare Disease Day and contributes to raising much-needed awareness of rare diseases. Take a look at the range here.

If you are wanting a personalised profile photo frame or would like to know more about how to use any of the graphics, please contact NPUK at

Get involved on social media 

Make sure you are following and tagging @RareDiseaseUK in all your #RareDiseaseDay2023 posts so they can like and share – and don’t forget to use the hashtags #CareForRare #RareDiseaseDay2023 and #RareDiseaseDay.

If you are getting involved in Rare Disease Day and sharing on social media, make sure to tag @NPUK too so that we can share on our page too!

Share your event 

Are you hosting an event in your local area that others can get involved with? Let us know what you are doing so we can help promote them. Contact and let us know what you’re getting up to. You could even organise a fundraiser for the big day, get in touch with our Fundraising Officer Jenny Geere ( for more details.


We hope you are as excited about Rare Disease Day as we are! Make sure to follow our social media on the day to see what we are up to.