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
Becky’s Story
From dealing with her family's NF1 to improving her fitness and running marathons, have a read of Becky's amazing story here:
Read More“Charity Shave Off” for NF in Northern Ireland
Janice and her family recently held a charity shave off in Northern Ireland. Find out more about the event here:
Read MoreBlackpool Magic Convention 2020
Find out more about the convention in aid of NTUK and how you can get involved here:
Read MoreReflections on 2019
Check out our reflection on what we feel was an incredibly succesful 2019 for the charity:
Read MoreHelen’s Story as told by her Mum Pauline
Due to her NF1, Helen has faced several struggles. Mum Pauline has openly shared her daughter's experiences with us here:
Read MoreNicola’s NF2 Journey
Nicola creates her own YouTube videos to help promote NF2 awareness. Find out more about her NF2 journey here:
Read MoreMaking the Future of Work inclusive of persons with disability
Check out James' recent presentation at a conference in Geneva highlighting issues of "face equality" in the workplace
Read More