Stories Behind the Stats with ITN Business (2024)
A rare condition is one that affects fewer than one in 2,000 people. Although rare conditions are individually rare, they are collectively common. There are currently over 7,000 rare conditions, with new ones regularly identified through scientific progress. 8 out of 10 of these rare conditions are caused by a change to someone’s genetic code.
1 in 17 people are affected by a rare condition at some point in their lifetime. In the UK the number totals over 3.5 million people. But statistics don’t give the full picture, ‘Rare Conditions: The Stories Behind the Stats’ looks at the people and the lives behind the numbers. Throughout the programme the patients and their families, the health professionals and the thought leaders tell their own stories to help raise awareness of the realities of living with a rare condition.
Animation
Our studio interview
You can watch the full Stories Behind the Stats programme here
Together Caring for Rare Disease with ITN Business (2023)
To mark Rare Disease Day, Genetic Alliance UK and ITN Business have produced ‘Together Caring for Rare Disease’, a news-style programme showcasing the need for coordinated care, which can lead to a faster, more accurate diagnosis, improving the impact on a person’s quality of life and wellbeing.
Intro
Together Caring for Rare Disease
Studio interview
You can watch the full Together Caring for Rare Disease programme here
Rare Disease Day 2022 videos
Sameena
Sameena Javed is a mother of three and lives near Glasgow. Sameena is also a bereaved mother; a child loss survivor; or whatever the phrase is for someone who has lost a child. She lost her 13-year-old son very suddenly in 2017 due to a rare brain condition called AVM (arteriovenous malformation), which is an abnormal connection of veins and arteries. Sameena quickly realised that bereavement is a taboo subject that is rarely spoken about.
David
David lives in South London. After starting going to the gym while at university he discovered fitness was a brilliant way to overcome the shyness he had previously experienced as a result of being affected by Poland syndrome. Diagnosed late in life, the first time David realised he might have a rare condition was after searching for ‘missing pec’ on the internet and finding this was a key characteristic of Poland syndrome. David’s video is a celebration of the strength you can find through overcoming the challenges of having a rare condition. He now seeks to inspire and support others to accept and love themselves.
Mellissa
Mellissa Fisher is a British artist whose work explores the relationships between nature and the self. Past works have involved using casts of her own body and the bacteria that live on it to visualise the invisible world on our skin. She graduated in 2016 from the MA Art and Science course at Central Saint Martins and has since undertaken major commissions for the Eden Project and the BBC. In 2016 Mellissa was commissioned by the BBC to create a large-scale microbial sculpture which formed a central theme of the documentary “Michael Mosely verses the Superbugs”, first shown on BBC4 in May 2017 and has now been shown internationally. Mellissa has extensive experience working collaboratively with scientists and leads a range of participatory workshops exploring art and science. Her video explores how living with a rare condition can provide both artistic inspiration and acceptance of your new normality.
Jace
Jace is a disabled, neurodivergent, queer, trans young person from Glasgow. Their diagnosis of nemaline myopathy was not obtained until they were 18 and they spent much of their childhood not understanding why they couldn’t do what other children could. In this video Jace talks honestly about the impact their rare condition has on their daily life, including the days where their body fails them, and about having to give up a much loved career working in care. Jace’s video also celebrates all the reasons they have to be proud. It is a testament to their strength of character in overcoming the physical and mental challenges their condition, and a disabling society, throws at them.
Shining a Light on Rare Conditions with ITN Business (2022)
To celebrate Rare Disease Day 2022 we partnered with ITN Productions to produce ‘Shining a Light on Rare Conditions’, a news-style programme exploring the advances in diagnostic technologies, new treatment and raising awareness of the conditions that can get overlooked.
Intro
Shining a Light on Rare Conditions
Studio interview
You can watch the full Shining a Light on Rare Conditions programme here