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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RAISING THE ROOF COMEDY NIGHT
First night on the NTUK 40 years Comedy Circuit 2022 at London's Backyard Comedy Club
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Chloe’s NF1 story
Chloe gives an honest assessment about coming to terms with having NF1 and how it has made her determined & strong
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“Happy Easter”
A message from Karen, our Charity Director, wishing you a very Happy Easter!
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Lisa helps Shine a Light on Neurofibromatosis in Belfast
Lisa has NF1, & lobbied the Belfast Lord Mayor to get Belfast City Hall lit up blue on Neurofibromatosis Day, 17th May
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Alex’s NF1 story
Alex describes her life with NF1, growing up in care, doing adaptive boxing & gym classes & getting NCFE Care qualifications
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Sumeeth’s Schwannoma story
Sumeeth, thought nothing of a muscle twitch after a hangover - it was the first symptom that led to a Schwannoma diagnosis
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Laura’s NF1 story
Laura is doing a skydive fundraiser to raise awareness & funds for NTUK, after her daughter was diagnosed with NF1
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Disfigurement equality at work - research
This research study by Queen Mary University, London, aims to improve workplace equality for people with disfigurements
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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
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