Helpline 07939 046 030

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

Filter by Date
Category
Reset

The International Rare Disease Showcase 1st – 3rd February 2022

The International Showcase is a unique & important event, with interactive sessions taking place from 1st-3rd February 2022

Read More

Grace’s NF1 story - Nothing stops me

Grace tells us how her NF1 hasn't stopped her from being active and achieving her goals

Read More

Mia’s NF1 story

Bridie & Warren describe their 17 month old daughter Mia's diagnosis with NF1

Read More

Richard & Diana’s 1,000,000 metre new rowing challenge

Diana & Richard have taken on a 1,000,000 metre rowing challenge in 100 days to raise funds & awareness

Read More

A Message from our Charity Director

A message from Karen, our Charity Director, on looking forward to a special 2022

Read More

Childhood Neurological Conditions Survey Part 2

Find out how you can help shape the future of treatment for Childhood Neurological Conditions such as Neurofibromatosis

Read More

Study - Resilient Youth with NF

Online Harvard Study for 12-17 year olds

Read More

Owen’s Ball 2021

The Owen Family held their annual black tie fundraiser for NTUK

Read More

Graham’s Super Nine Shines A Light on NF

Graham's 7 year old great-nephew Nathan is his inspiration for his epic challenges to fundraise for NTUK

Read More