New Rare Disease Center Opens in U.K. to Treat Rare Genetic and Skin Conditions

Rare Daily Staff

The Rare Diseases Centre at St Thomas’ Hospital, a first-of-its-kind center in the United Kingdom to treat patients with a number of complex rare genetic conditions, has opened its doors.

The center is designed for adults and children with life-long genetic and skin conditions. It brings together a variety of specialists in one place with the intent of saving time and improving the patient experience.

The rare conditions treated at the center include epidermolysis bullosa (a genetic connective tissue disease that causes blisters and sores), xeroderma pigmentosum (a genetic disorder affecting patients’ ability to repair the damage caused by ultraviolet light increasing the risk of skin cancer and eye disease), and Bardet-Biedl syndrome (a disorder that can cause blindness and kidney disease, as well as affect other parts of the body).

Guy’s and St Thomas’ has previously served as a national center for these patients, but until the new center opened, they were seen in separate clinics at both the Guy’s and St Thomas sites and required patients to travel between various appointments.

The new center provides all appointments with different medical teams in one place. The hospital said it also will also allow the clinics to operate with greater efficiency.

In addition to a communal space for patients to wait, the center includes a UV-free area for patients with xeroderma pigmentosa, large consultation rooms to allow entire families affected by the same genetic condition to be seen at once, and a state-of-the-art video conference suite that allows clinicians to work more closely with patients’ local health services across the UK and discuss cases on an international level.

“We wanted to design a center that, instead of feeling clinical, created a relaxing, healing environment for people that come here. It is very important for these patients to have somewhere permanent that they can call home because they have frequent hospital appointments. So far everyone seems delighted with it,” said Jemima Mellerio, consultant dermatologist at Guy’s and St Thomas’. “There are a lot of common features between the conditions we are treating at the center so this will give medical teams an opportunity to learn from each other and we are excited to be able to work more closely together to deliver the best possible care.”

The Rare Diseases Centre has been funded by Guy’s and St Thomas’ Charity, the charity DEBRA, the Four Acre Trust and the Photodermatology Charitable Trust.

November 14, 2017