Westminster Virtual Rare Disease Day 2022 Reception
23 February 2022
Nerve Tumours UK joined the annual international event aimed at raising awareness and highlighting the needs of people with rare diseases.
There are over 6000 rare diseases affecting over 3.5 million people across the UK.
Collectively, rare diseases are not rare.
Today, the rare community came together to raise awareness of the common issues affecting those living with rare conditions.
We joined the Westminster Rare Disease Digital Forum, chaired by Liz Twist, MP and Chair of the APPG on Rare, Genetic and Undiagnosed Conditions, and hosted by the Genetic Alliance.
_1024x768.jpg)
We heard from people affected by rare conditions, discussing the progress of the National Plans for Rare Diseases, which are due to be launched this year.
Maria Caulfield, the Minister responsible for rare conditions, spoke on the future for rare conditions.
_1024x768.jpg)
The Neurofibromatosis community was represented by Dexter Parker who has Neurofibromatosis Type 1, giving insights on how the condition affects his daily life,
_1024x768.jpg)
now a young aspiring student and a story of determination and hope. Thank you Dexter for your support.

Watch his address to the reception here
Stay tuned on our social channels for Rare Disease Day 2022 on Monday 28th February
Filter News

Oliver’s Blog
Oliver Bromley shares some personal experiences of visible difference, and how education and kindness can reduce stigma.
Read More_2_800_600_s_c1.jpg)
3BM & Fusion’s Purple Forum nominate Nerve Tumours UK as their Charity of the Year
Take a look inside Purple Forum and how they're raising awareness and funds for the NF community.
Read More_2_800_600_s_c1.jpg)
George, Alisya’s & Leo’s NF1 Story
Find out how George and his team at Rolls Royce are raising NF awareness because of NF hero Leo.
Read More_800_600_s_c1.jpg)
World NF Awareness Month 2025: In Review
A look back at some of the highlights of World NF Awareness Month, May 2025.
Read More_1_800_600_s_c1.jpg)
Emily Owen: World NF2 Day
Our charity Ambassador offers her thoughts and guidance on NF2 day
Read More
Shine A Light on NF May 2025
The Shine A Light on NF 2025 awareness campaign had 176 buildings around the UK & the Republic of Ireland lit up blue!
Read More_800_600_s_c1.jpg)
Mohamed’s NF Story
Mohamed opens up about his NF journey and why he's now thriving after being diagnosed.
Read More
Do charity ads get on your nerves?
The 4th NTUK and RBH digital media awareness campaign features a cheeky attention grabbing advert
Read More