30 April 2021
Nerve Tumours UK joined events showcasing Rare Disease Day hosted by the Genetic Alliance on 28 February 2021.
Rare Disease Day focuses on raising awareness amongst the general public, policy makers, public authorities, industry representatives, researchers, health professionals and those with an associated interest. It hopes to focus their minds onto the genuine needs of people living with rare diseases, and the impact it has on their daily existence.
At some point in their life, 1 in 20 people will be affected by the manifestations of a rare disease. Despite this, there are no cures for the majority of rare diseases, including Neurofibromatosis.
After a year in lockdown, the general public now grasps & appreciates how restrictions can affect their own daily existence, and we hope that lessons have been learnt and that they now understand how those affected by Neurofibromatosis, and other rare diseases, face these very restrictions, in varying forms, on a daily basis.
Now is the perfect time to ramp up awareness. We attended the online Parliamentary meeting, where all four nations of the UK were represented and presented an effective strategy for rare diseases, so as to secure the best use of available resources, maximise the health gain for all those with rare conditions, and to create a framework for research that is necessary to support the development of innovative therapies for unmet medical needs.
Some of you shared your personal stories on the day, as part of the campaign and entered the Rare Reach Festival: “Emily’s Lockdown in Silence,”” Ella’s Flu Jab” and “Patrick’s 14 Mile Challenge” were all included, and these highlight the impact a rare disease can have on the life of those affected.
People with Neurofibromatosis should not be in lockdown ad infinitum. Your voice must be heard in this changing world!
'Patrick's 14 Mile Challenge' won in the category 'Best Storytelling by a Large Charity or Industry Organisation'
"Our judges thought Patrick’s story spoke brilliantly to the themes of Rare is Proud – it really showcased strong and proud storytelling. They also really enjoyed the fact it was a young person telling a positive story of hope. "