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Celebrating the new UK rare diseases framework

Dice's take on the importance of the rare diseases framework

At Dice, we work with many clients who specialise in the treatment of rare diseases. Suffice to say it’s a challenging area to work in, but it’s also incredibly rewarding.

To give it some context, it’s worth going back 20 or 30 years to when most pharma companies were focused on solving larger-scale issues such as HIV. While research into HIV treatment continues – with the ultimate goal of finding a cure – the astounding work of scientists and pharma means a lot of well known, chronic illnesses are now treatable. However, that still leaves the 300 million people worldwide who live with a rare disease.

However, that still leaves the 300 million people worldwide who live with a rare disease.


A rare disease is defined as a condition that affects less than 1 in 2,000 people By current estimates, there are over 7,000 rare diseases, but new conditions continue to be identified as research advances.

While rare diseases are individually rare, they are collectively common; approximately 7% of people are affected by a rare disease at some point during their life. In the UK, that equates to about 3.5 million people.

Rare diseases can be both life-limiting and life-threatening, with children disproportionately affected. 75% of rare diseases affect children, and more than 30% of children with a rare disease die before their fifth birthday.


A lack of awareness makes rare diseases very difficult for GPs and other clinicians to identify. In some cases, a patient may know more about their disease than a doctor. This typically leads to delayed diagnoses, with GPs referring patients to multiple specialists, and even then there’s no guarantee of a disease being diagnosed.

Thankfully it’s a problem the government has resolved to tackle. Most notably, it has published the UK Rare Diseases Framework – laying out a clear plan for improving the lives of people living with rare diseases in the UK.

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8th April 2022


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