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.
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.
The Neurofibromatosis community was represented by Dexter Parker who has Neurofibromatosis Type 1, giving insights on how the condition affects his daily life,
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