Genetic Alliance UK and ITN Business to launch ‘Rare Conditions: The Stories Behind the Stats’

There are over 7,000 identified rare diseases, some so rare they only affect a few people.  Collectively however, they are common, affecting 3.5 million people in the UK at some point in their lives, that is 1 in 17 people.

But beyond these statistics are the real lives; the children, the men, the women living with these rare conditions day to day. And we want to tell those stories.  In the programme we will meet patients and their families, health professionals and experts in the field, all to help raise awareness of the realities of living with a rare condition and showcase the work being done to help improve data sharing, diagnosis and treatments.

Launching on Rare Disease Day, 29 February 2024 – ITN Business and Genetic Alliance UK are co-producing Rare Conditions: The Stories Behind the Stats, a news-style programme raising awareness of people affected by rare, genetic, and undiagnosed conditions.

Anchored by Royal Television Society award winning journalist and presenter Warren Nettleford, the programme will feature informative interviews with industry insiders, news items and sponsored editorial profiles, filmed both at the ITN London studio and on location. The programme will launch on 29 February 2024 to mark Rare Disease Day and will be supported by an extensive strategic digital marketing campaign, identified by hashtag #StoriesBehindTheStats

Louise Fish, CEO of Genetic Alliance UK said: “Although rare diseases are individually rare they are collectively common, affecting 3.5 million people in the UK. It is currently estimated that there are over 7,000 rare diseases, with new conditions regularly identified through scientific progress.  Many rare diseases are life-long and complex which means that people can be diagnosed at any age, and under the care of a wide range of medical specialities. NHS data is fragmented and poorly coded making it hard to collect information about how many people have a particular condition and how they are currently being supported by the health service. However, the facts and figures we have been able to find paint a vivid picture of the broad and diverse community of people affected by rare conditions in the UK.  Some rare conditions can affect over 25,000 people in the UK, the rarest genetic conditions may affect just one family in the country. Every individual living with a rare condition has a story to tell about how it affects them day-to-day, and the vital support they need to live their life to the fullest.”

Nina Harrison-Bell, Head of ITN Business said “We are delighted to be collaborating with Genetic Alliance for the third consecutive year.  Rare conditions by their nature affect fewer people than more common conditions, so don’t always get the attention they deserve, but these stories are important, and we are looking forward to being able to tell them”.

If your organisation has a story to tell, or if you want to hear more about the project, please contact Head of Healthcare Programming, Georgia Gerstein.