An urgent question was granted today on our ability to share research and provide treatments for rare diseases. I used my question to press upon the minister if we would still be part of a European wide institute designed for tackling rare diseases following a Brexit on 31 October 2019. The UK is a member of this organisation, which is backed by €1,000,000.
I’m sad to say that the minister could not guarantee we would retain our access to this vital fund and service. Instead stating that any future agreement would decide our access. I cannot see why the UK Government would want to see us lose access to this important organisation that tackles some of the most horrific diseases.
It is a honour to host Same But Different in Parliament for their exhibition to highlight the fact that 30% of children diagnosed with a rare disease will die before their 5th birthday. It is of the utmost importance that dedicated charities, such as Same But Different, are able to bring their message to the heart of our politics so that Ministers, MPs, Peers and distinguished visitors to the Houses of Parliament can be made aware that approximately 3.5 million people in the UK are affected by a rare disease at some point in their life.
The noble aim of Same But Different’s exhibit in Parliament is to highlight the journey families go on from diagnosis onwards when they are told their child has a rare disease.
Sadly, only 200 rare diseases have a treatment at present. It is hoped that this event will raise awareness through the photographic work of Ceridwen Hughes, who has worked in conjunction with artist Jamie Harris, to produce a truly unique exhibit that combines photography, video and sculpture.
The dedication Ceridwen has shown over the years that I have worked with her is truly astounding. She has utilised her talents for the betterment of others and that is something we should all be in admiration of.