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
_3_800_600_s_c1.jpg)
Diet, fatigue and NF1
Take part in this research study which will explore the connection between diet, fatigue and NF1 in children and young adults
Read More
Our Ambassadors
NTUK is delighted to introduce you to our three new ambassadors, Emily Owen, Georgia Baum & Amit Ghose.
Read More
London Marathon 2025 Team NTUK
Congratulations and a big THANK YOU to Team NTUK for their superb efforts
Read MoreIan’s Story
Read Ian's story and why he's going the extra mile for NF awareness and his daughter Emily
Read More
London Marathon 2025
Meet our 2025 London Marathon fundraisers—each running to support those affected by NF. Read & share their stories.
Read More
Nerve Tumours UK Virtual Coffee Mornings
Chat and connect in our newly announced NTUK Virtual Coffee Mornings
Read More_800_600_s_c1.png)
Understanding the Impact of Nerve Tumours UK: Insights from Our Latest Survey
Take a look at all the insights from our latest community surveys
Read More_800_600_s_c1.jpg)
Rare Disease Day 2025
All the highlights, updates and impact from NTUK's involvement in Rare Disease Day 2025
Read More