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/Picture1_370x280_800_600_s_c1.jpg)
Ashley’s NF1 story
Ashley loves red pandas, he's a 32 year old IT Specialist and has NF1. He is running a half marathon to raise NF awareness
Read More![](https://nervetumours.org.uk/images/made/images/common/Mandy__Katrina_370x280_800_600_s_c1.jpg)
Guy’s & St.Thomas’s Monthly Care Awards
NF paediatric nursing team, Mandy and Katrina win the Guy’s and St Thomas’ Hospital November CARE Award 2022
Read More![](https://nervetumours.org.uk/images/made/images/common/NTUK__gov_logos_370x280_800_600_s_c1.jpg)
Cost of Living Crisis - Initiative
NTUK have co-signed an open letter to the Chancellor of the Exchequer on the cost of living
Read More![](https://nervetumours.org.uk/images/made/images/common/Alexion_Open_Health_logo_cover_image_370x280_800_600_s_c1.jpg)
Living with NF1: psychological impact & experiences
Research: Understanding the reality of the NF1 journey from diagnosis to daily life, and the emotional impact it has
Read More![](https://nervetumours.org.uk/images/made/images/common/Kian_NF2_Blog_image_9_preview_800_600_s_c1.png)
Kian’s NF2 Blog
Kian shares his NF2 journey and his inspirational path - training to swim in the para-olympics
Read More![](https://nervetumours.org.uk/images/made/images/common/Union_Chapel_cover_370x280_800_600_s_c1.jpg)
Union Chapel London Comedy night
Check out these superb photos from our final comedy night of the year
Read More![](https://nervetumours.org.uk/images/made/images/common/Joanna_ringing_bell_370x280_800_600_s_c1.jpg)
Joanna’s story
Joanna highlights the importance of women with NF1 receiving mammograms, and being able to train for the 2023 London Marathon
Read More![](https://nervetumours.org.uk/images/made/images/common/Nottingham_University_logo_370x280_800_600_s_c1.jpg)
Mobile Device Usage by Young Children with Special Educational Needs (SEN) or Disabilities in Their Home
Research: exploring current use of mobile devices in the home - parents' perspectives & experiences
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