Rare Disease Day 2021 and Rare Reach Festival
15 February 2021
Rare Disease Day 2021 will take place on Sunday 28 February
Nerve Tumours UK takes part as a member of the Genetic Alliance. This 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.
We invite you to join in - you can share your story on social media until 12.03.2021- using the hashtag #RareReach2021 alongside the #RareDiseaseDay2021 hashtag, and if appropriate, one of the Rare Disease Day themes – #RareIsStrong, #RareIsMany, #RareIsProud.
Rare Reach Festival
Showcasing digital storytelling
STORYTELLING IS POWERFUL. As part of Rare Disease Day 2021, the Genetic Alliance is launching the first Rare Reach Festival to celebrate the online storytelling by the genetic, rare and undiagnosed community.
By posting real-life stories (funny, sad, inspirational and everything in between) on social media, people affected by rare conditions share their day-to-day experiences to help raise awareness of how their lives are impacted by their condition. These stories also help reach out to others in the same situation offering solidarity, hope and community.
Nerve Tumours UK wants to celebrate and encourage this storytelling. We are inviting everyone in the Nerve Tumours community to tell their story in a social post or repost any old posts that give you a voice, anything that is part of your condition, a fundraiser you have done for us or a story that you support. Rare is strong; Rare is many; Rare is proud.
You can join the Rare Reach official competition until 12.03.2021
Filter News
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Nerve Tumours UK Specialist Neurofibromatosis Nurses attend the National NF2 CQuinn Meeting in Manchester.
Have a read about what was talked about at this year's National NF2 CQuinn Meeting in Manchester
Read More![](https://nervetumours.org.uk/images/made/images/common/BrowsealoudPage-Preview-800-x-500-px_800_600_s_c1.png)
Nerve Tumours UK adds BrowseAloud to their website
Have a read about the new software we have uploaded to our website in order to make it more accessible to everyone.
Read More![](https://nervetumours.org.uk/images/made/images/common/Will-Page-Preview-800-x-500-px_800_600_s_c1.png)
11 year old inspired to run 31 miles within 8 hours for his brother who has NF
Have a read about young Will's remarkable achievement that has been inspired by Adam Jacob's story on our website
Read More![](https://nervetumours.org.uk/images/made/images/common/SimonPage-Preview-800-x-500-px_800_600_s_c1.png)
Simon’s Story
Have a read of Simon's Story and his desire to help NF2 Bio Solutions find a cure for NF2:
Read More![](https://nervetumours.org.uk/images/made/images/common/burbsPage-Preview-800-x-500-px_800_600_s_c1.png)
Steve Brine MP helps spread awareness for Nerve Tumours UK
The Burbridge Family recently met up with MP Steve Brine to help spread awareness for NF. Find out more here:
Read More![](https://nervetumours.org.uk/images/made/images/common/TomPage-Preview-800-x-500-px_800_600_s_c1.png)
Meet Tom
Tom Hazell is 37, works in IT, lives in Essex with his long-term partner, he has NF2/Schwannomatosis Find out more here:
Read More![](https://nervetumours.org.uk/images/made/images/common/James-GPage-Preview-800-x-500-px_800_600_s_c1.png)
A Gamble Across Britain
James will be cycling the length of the country this September- that's 980 miles! Find out more here:
Read More![](https://nervetumours.org.uk/images/made/images/common/Buckingham-palacePage-Preview-800-x-500-px_800_600_s_c1.png)
Nerve Tumours UK at Her Majesty The Queen’s Buckingham Palace Garden Party
Nerve Tumours UK attended one of Her Majesty The Queen's Summer Garden Parties. Find out more here:
Read More![](https://nervetumours.org.uk/images/made/images/common/DanPage-Preview-800-x-500-px_800_600_s_c1.png)
Dan’s Story
Dan wants everyone to know that NF1 comes in different forms. Have a read of his courageous story here:
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