New centre to transform care of rare illnesses

A unique new centre is opening at Guy's and St Thomas' NHS Foundation Trust with our support to care for adults and children from across the UK living with harmful rare conditions. 

The opening of the new Rare Diseases Centre will mean that patients with skin conditions that also affect other organs in the body can now be seen in one place by several specialists, saving time and improving patients’ experience. It will be the only facility of its kind in the UK to care for people of all ages. 

The rare conditions include xeroderma pigmentosum (XP), a genetic skin disorder which means patients are not able to repair the damage ultraviolet light does to their skin therefore making them likely to develop skin cancer; epidermolysis bullosa (EB), which causes fragile skin prone to recurrent blisters and painful sores, and Bardet-Biedl syndrome (BBS), a disorder that can cause blindness and kidney disease.

We have provided the new Centre with funding of £1.8 million. Charity Debra, the Four Acre Trust and the Photodermatology Charitable Trust are also contributing to create the new space for this service, which is expected to open at St Thomas’ Hospital in late 2017. 

"The new Centre will feature UV-free areas for people with severe light sensitivity and large consultation rooms to see entire families affected by the same genetic condition at once. Changes like these, designated with patients and professionals at heart, can truly transform people’s experiences in hospital", explains our Chief Executive, Kieron Boyle.

“The generous support from our donors and partner charities, plus additional backing from our grants scheme, means that facilities will finally measure up to the high quality of care that the Trust gives to people living with these complex and life-altering conditions.”

Sandra Webb is the Trust’s patient representative in the XP team and her 22-year-old son Alex has the condition. She said "patients can feel stigmatised due to their conditions so it’ll make a big difference to them knowing that the Trust is introducing something special to improve their care."

Comment on this story


No comments yet, be the first to add one!