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

Disfigurement equality at work - research
This research study by Queen Mary University, London, aims to improve workplace equality for people with disfigurements
Read More
RAISING THE ROOF: CHARITY COMEDY NIGHT IN AID OF NERVE TUMOURS UK
Join us in London on our first comedy night to celebrate 40 years of Nerve Tumours UK
Read More
NF1 stem cell research study
Julieta is carrying out stem cell research to understand brain development in those with NF1
Read More
Ava-Lily’s NF1 story
Ava-Lily is thriving at school despite various NF1 related difficulties - read her story
Read More_370x280_800_600_s_c1.jpg)
Westminster Virtual Rare Disease Day 2022 Reception
NTUK joined the annual international event aimed at raising awareness & highlighting the needs of people with rare diseases
Read More
Rare Disease Day 2022
Nerve Tumours UK joins events showcasing Rare Disease Day, hosted by the Genetic Alliance, on 28 February 2022
Read More
Runderpants Winchester 2022
The Runderpants fun run makes a successful return to Winchester
Read More
NF1 Research study with fly model
How can studying the brain of a fruit fly help with understanding of NF1?
Read More
Stuart’s Schwannoma Story Part Two
Stuart's update takes us through the operation to remove the Schwannoma, recovery and getting back to marathon training.
Read More