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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Mary Thomas wins Specialist Nurse of the Year 2019!
Have a read about the Guy's and St Thomas' Celebration of International Nurses Day here
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Luke and his NF Ninjas
Have a read of Luke's story of growing up with NF and how he plans to bring his chidren up proud of their NF as well.
Read More![](https://nervetumours.org.uk/images/made/images/common/Stannington-park-Page-Preview-800-x-500-px_800_600_s_c1.png)
Stannington Community Association’s Easter Fête
Stannington Community Association's Easter Fête was a success! Read about this years superb event here:
Read More![](https://nervetumours.org.uk/images/made/images/common/Marathon-Page-Preview-800-x-500-px_800_600_s_c1.png)
London Marathon 2019: 26 hard miles for 26,500 people affected
Thank you so much to all our incredible Marathon runners for going the extra mile (or 26)!
Read More![](https://nervetumours.org.uk/images/made/images/common/youtubePage-Preview-800-x-500-px_1_800_600_s_c1.png)
Take a look at our new YouTube Channel
Take a look at our new YouTube channel and how to subscribe here
Read More![](https://nervetumours.org.uk/images/made/images/common/Pear-KellyPage-Preview-800-x-500-px_800_600_s_c1.png)
Meet Pearl
Pearl Kelly is 22, and has multiple complex problems caused by her NF1. Here she explains her outlook on life
Read More![](https://nervetumours.org.uk/images/made/images/common/JoannaPage-Preview-800-x-500-px_800_600_s_c1.png)
Meet Joanna
Joanna is a lecturer in Mitochondrial Genetics at Newcastle University, she recently ran the London Marathon. Meet her here
Read More![](https://nervetumours.org.uk/images/made/images/common/Maia-Thornton-ResearchPage-Preview-800-x-500-px_800_600_s_c1.png)
New Research Into Appearance Altering Conditions
Maia Thornton PhD is looking for both parents and professionals who care for someone with an appearence altering condition
Read More![](https://nervetumours.org.uk/images/made/images/common/AdamPage-Preview-800-x-500-px_800_600_s_c1.png)
Adam’s Story
Adam has NF1 yet is still one of the most active and athletic people in the UK. Read about his fascinating story here:
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