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
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 MoreSian & Connor’s story
Sian & Connor describe the invaluable support from NTUK during her pregnancy with baby Reuben
Read MoreAnita, aka Fat Lady Slim, is running the London Marathon for NTUK
Anita is fundraising on behalf of niece Sophie & great-niece Lexie who have NF2 by running the London Marathon
Read MoreNeurofibromatosis 1 in the 21st Century
Professor Rosalie Ferner delivers key speech “Neurofibromatosis 1 in the 21st Century” to the BPNA 2022 Annual Conference
Read MoreThe International Rare Disease Showcase 1st – 3rd February 2022
The International Showcase is a unique & important event, with interactive sessions taking place from 1st-3rd February 2022
Read MoreGrace’s NF1 story - Nothing stops me
Grace tells us how her NF1 hasn't stopped her from being active and achieving her goals
Read MoreMia’s NF1 story
Bridie & Warren describe their 17 month old daughter Mia's diagnosis with NF1
Read MoreRichard & Diana’s 1,000,000 metre new rowing challenge
Diana & Richard have taken on a 1,000,000 metre rowing challenge in 100 days to raise funds & awareness
Read MoreA Message from our Charity Director
A message from Karen, our Charity Director, on looking forward to a special 2022
Read More