Rare Conditions: The Stories Behind the Stats

For the third consecutive year, ITN Business is proud to be partnering with Genetic Alliance UK to produce a news-style programme. ‘Rare Conditions: The Stories Behind the Stats.’ Hosted by Sangeeta Kandola from the ITN London Studio, the programme launches on Rare Disease Day, which is observed every year on the last day of February. In 2024 this falls on the 29 of February, the rarest day of the year. 

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.

The programme features an interview with Louise Fish, Chief Executive of Genetic Alliance UK and Marian Adejokun who talks about her experience with Stevens-Johnson Syndrome.

The programme includes sponsored editorial profiles from the following organisations:

• Mirum Pharmaceuticals – showcase its work in bringing relief, support and resources to families living with Alagille Syndrome.  
• Sciensus – discuss the communities enabling people and their families to advocate and support one another in a secure, safe environment regardless of geography or language.
• Vertex Pharmaceuticals – shares its unique strategy that prioritises innovation, with hopes to provide next generation medicines to benefit those living with rare and serious diseases.
• HRA Pharma – shares how it is raising awareness, as well providing treatment for rare conditions such as Cushing’s Syndrome.