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

Joy’s NF1 story
Joy describes living with NF1; her son's diagnosis and support at school; fundraising and shining a light on NF
Read More
A man on a mission: Onno Faber and his NF2 journey
Onno Faber - since NF2 diagnosis aged 33, Onno is a man on a mission. Article courtesy of NEO.LIFE
Read More
Kate’s NF1 Story & DanceAthon
Kate describes her son's NF1 journey and how NTUK supported them
Read More
Strictly Come Running: London Marathon Class of 2021
Congratulations to our class of 2021 London Marathon runners
Read More
Nerve Tumours UK Specialist Neurofibromatosis Nurses attend the 2021 NHS England NF2 meeting
Read more about the England NF2 meeting - working together to improve the experience of NF2 patients
Read More
Douglas Thomson’s NF1 Story
Douglas describes life with NF1 and how losing his leg was one of the best things to happen to him
Read More
Tricia’s Wingwalk and Birthday Fundraiser for Sarah and Keith
Tricia's fundraising wingwalk in memory of her daughter Sarah who had NF1, and to remember her father Keith
Read More
Student Voice Prize 2021
The 2021 Student Voice Prize opens on 6th October! #DareToThinkRare for the 8th annual essay competition!
Read More