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/image_(2)_370x280_800_600_s_c1.jpg)
Eden Study
Investigating early social, communication and attention development in babies who have NF1/ or a parent has NF1
Read More![](https://nervetumours.org.uk/images/made/images/common/image0_(13)_370x280_800_600_s_c1.jpg)
Bethany’s South Coast Challenge
Bethany is taking on the 25km South Coast challenge to give back after recovering from nerve tumour surgery
Read More![](https://nervetumours.org.uk/images/made/images/common/Eden_P_study_370x280_800_600_s_c1.jpg)
Eden-P Research Study
Participants required for research study for pregnant women who have a family history of NF1
Read More![](https://nervetumours.org.uk/images/made/images/common/inform_your_GP_370x280_800_600_s_c1.jpg)
Resources Survey: Initial Diagnosis
Take part in our survey and help shape Nerve Tumours UK's support service for those newly diagnosed with NF
Read More![](https://nervetumours.org.uk/images/made/images/common/NF1_(1)_370x280_800_600_s_c1.jpg)
Appearance Collective NF1 support survey
Appearance Collective, Centre of Appearance Research (UWE) online survey on what support is needed for those affected by NF1
Read More![](https://nervetumours.org.uk/images/made/images/common/Mel_swimming_370x280_800_600_s_c1.jpg)
Shine A Light - Swimming for World NF Day
Mel, one of our Specialist NF Nurses, will be swimming 17 miles to Shine a Light during World NF Month
Read More![](https://nervetumours.org.uk/images/made/images/common/UC_370x280_800_600_s_c1.jpg)
Union Chapel Stand Up for Nerve Tumours UK Comedy Fundraiser
Check out the photos from World NF Day's Comedy Fundraiser at London's Union Chapel
Read More![](https://nervetumours.org.uk/images/made/images/common/Anthea__Emily_Owen_370x280_800_600_s_c1.jpg)
Working Together: from a tentative diagnosis and beyond
Emily Owen & her mother Anthea, recount their memories of Emily's NF2 diagnosis
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