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
![](https://nervetumours.org.uk/images/made/images/common/Tom_Moran_wedding_day_370x280_800_600_s_c1.png)
Thomas’ NF1 story
Thomas describes growing up with NF1, supporting Liverpool FC and taking on challenges with support from his wife
Read More![](https://nervetumours.org.uk/images/made/images/common/Untitled_design_(41)_800_600_s_c1.png)
Meet Jessica, new Specialist NF Nurse
Jessica will work with Specialist NF Nurse Helen Tomkins, supporting families across Devon and Cornwall.
Read More![](https://nervetumours.org.uk/images/made/images/common/fb_eventcover1200_628_-26540595-e1708475536938_800_600_s_c1.png)
Rare Disease Day 2024
Read our update on the events and meetings NTUK attended to help raise awareness of NF
Read More![](https://nervetumours.org.uk/images/made/images/common/77529945_1705140784649954_r__1200x900_with_RDD_logo_1_800_600_s_c1.jpg)
Johnathan’s story
Johnathon's family are spreading awareness of the importance of attending health checks and advocating for vulnerable people
Read More![](https://nervetumours.org.uk/images/made/images/common/image2_(3)_370x280_800_600_s_c1.jpg)
Jen’s NF1 story
Jen praises the great support received since her NF1 diagnosis, allowing her to thrive & achieve a 1st class degree.
Read More![](https://nervetumours.org.uk/images/made/images/common/Untitled_design_(2)_800_600_s_c1.png)
Charlotte & Evie’s story
'Sticker Queen' Evie is 4 years old and was diagnosed with NF1 after tests for a 'lazy eye'.
Read More![](https://nervetumours.org.uk/images/made/images/common/Untitled_design_(5)_800_600_s_c1.png)
Luke’s Story
Luke had NF1 since childhood. Now an adult, surgery last year has enabled him to play football and do whatever he wants
Read More![](https://nervetumours.org.uk/images/made/images/common/Untitled_design_(1)_800_600_s_c1.png)
Charlotte’s Story
When Charlotte was 6, she was diagnosed with NF1, along with her brother & dad. Now she is on a mission to raise awareness
Read More![](https://nervetumours.org.uk/images/made/images/common/cover_image_with_Manchester_Uni_logo_370x280_800_600_s_c1.jpg)
Eden P for healthcare professionals
Healthcare professionals, who provide support to expectant parents with NF1 are invited to take part in the Eden P study
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