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/durham-researchPage-Preview-800-x-500-px_800_600_s_c1.png)
New research into non-discrimination law
Durham University is looking for participants who look different due to their health complications. such as NF.
Read More![](https://nervetumours.org.uk/images/made/images/common/MichaelFry2_800_600_s_c1.png)
Letter from our new Chair
A letter detailing the vision of our new chair, and the future of the charity.
Read More![](https://nervetumours.org.uk/images/made/images/common/NTUK-logo_800x500px_800_600_s_c1.gif)
Launch of Nerve Tumours UK
Following a major strategic review, the Neuro Foundation charity is now known as Nerve Tumours UK.
Read More![](https://nervetumours.org.uk/images/made/images/common/shruti-garg_800_600_s_c1.jpg)
NF1 research award first for UK consultant
Dr Shruti Garg is the first non-US resident to receive NF1 $555,000 research award.
Read More![](https://nervetumours.org.uk/images/made/images/common/PoppyPage-Preview-800-x-500-px_800_600_s_c1.png)
Polly’s Story (as told by Mum Emily)
"Despite being on weekly chemotherapy she is a happy child and never fails to inspire us all"
Read More![](https://nervetumours.org.uk/images/made/images/common/eden-baby_800_600_s_c1.jpg)
EDEN Study Progress Report
The EDEN study has enrolled 30 babies and toddlers to understand how infants with NF1 develop.
Read More![](https://nervetumours.org.uk/images/made/images/common/EllaPage-Preview-800-x-500-px_800_600_s_c1.png)
Ella’s story
Have a read of Ella's story here. An uphill battle which we know she will turn around!
Read More![](https://nervetumours.org.uk/images/made/images/common/Grace-colourPage-Preview-800-x-500-px_800_600_s_c1.png)
Grace’s Story
Have a read of Grace's story and she overcame her insecurites surrounding her NF
Read More![](https://nervetumours.org.uk/images/made/images/common/Helpful_Charities_800x500_preview_800_600_s_c1.jpg)
Helpful Charities
Find some of the other helpful charities that may be able to support you here
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