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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Olivia’s NF1 story
Olivia and mam Kelly share their NF1 story, highlighting school achievements and support from NTUK Specialist Nurses
Read More![](https://nervetumours.org.uk/images/made/images/common/20230517_190605_370x280_800_600_s_c1.jpg)
Eashan’s NF1 story
'Why Run'... Eashan was diagnosed with NF1 after losing his eyesight when he was 5. His mother Jen tells his story.
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2023 Awareness Campaign
Nerve Tumours UK have joined forces with RBH to raise awareness for a second successive year.
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Disclosing and explaining visible differences - CAR Workshop
Read more about the workshop, featuring additional guidance from Specialist NF Nurse Rebecca Rennison
Read More![](https://nervetumours.org.uk/images/made/images/common/Jo__Oscar_370x280_800_600_s_c1.jpg)
Jo Ward’s Avastin Blog
Jo Ward, CEO of NF2 BioSolutions UK, shares a blog about her son Oscar's Avastin journey
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Nigel’s story - Normal is as normal does
Nigel lived a normal life until age 47. The next 20 years took him from NF1 to NF2 to Schwannomatosis to mosaic NF2
Read More![](https://nervetumours.org.uk/images/made/images/common/Helen_Tomkins_370x280_800_600_s_c1.jpg)
Meet Helen
Helen is the Specialist NF Advisor for Devon and Cornwall and is based at Derriford Hospital in Plymouth.
Read More![](https://nervetumours.org.uk/images/made/images/common/Rebecca_Rennison_370x280_800_600_s_c1.jpg)
Meet Rebecca
Specialist NF Nurse Rebecca is Lead Nurse, NTUK and is based at the Genetics Institute at the Centre for Life in Newcastle
Read More![](https://nervetumours.org.uk/images/made/images/common/NTUK_Neuro_Alliance_Huntingtons_logos_370x280_800_600_s_c1.jpg)
World Mental Health Day 2023
NTUK (as part of the Neurological Alliance) has signed a joint letter aimed at improving access to mental health services
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