Health Department For UK Nations Promise To Find Cure For Persons With Rare Diseases.

Better Treatment For Those With Rare Diseases Promised.


Girl, 7, is one of only TWENTY people in the world with rare disease | UK |  News |
Girl, 7, with a rare disease in the UK.

A revamped UK Rare Disease Framework was published last month by the health departments of all four UK nations. At a virtual meeting today, organized by the charity Genetic Alliance UK, health ministers will discuss plans to improve the health outcomes of those living with diseases that individually affect less than 1 in 2,000 people.

Ola Fagbohun, from Sheffield, has Desmoid-type fibromatosis, a benign tumor, that affects around 60 people in the UK. She says isolation and a lack of information about rare diseases compound the problems caused by the condition itself.

“Having a rare disease, it’s the psychological impact of being alone with that disease and trying to find others who can understand what you’re going through,” she said. “When a surgeon is telling you that they might have to cut out bits of your arm, and that’s not a cure, they could continue cutting bits of your arm out, I mean where do you go with that information?”

Lisa Beaton, whose 12-year-old daughter Amelia has a debilitating neuromuscular disease so rare it has no name, says governments must encourage the health profession to work together for Amelia’s sake. “I would like for her to have a unified approach to her care growing up and knowing where she can access help and support,” she said. “She’s getting older and she’s asking more difficult questions and needs to have more control and ownership over her own life.”

Amelia Beaton's condition is so rare it doesn't even have a name
Lisa Beaton has a rare disease which does not have a name.

The four nations framework published in January was signed by Lord Bethell, the parliamentary under secretary of state for innovation at the Department of Health and Social Care; Robin Swann, Minister for Health at the Northern Ireland Executive; Vaughan Gething, the minister for health and social services in the Welsh government; and Mairi Gougeon, minister for public health, sport and wellbeing in the Scottish government.

It pledged to “develop and publish a plan detailing the steps they will take to meet the framework aims in a way best suited for their population and health system”.

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