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DEBRA’s Royal Patron, The Countess of Wessex officially opens the Rare Diseases Centre at St Thomas’s Hospital

DEBRA’s Royal Patron, The Countess of Wessex officially opens the Rare Diseases Centre at St Thomas’s Hospital

DEBRA’s Royal Patron, The Countess of Wessex officially opened the Rare Diseases Centre at St Thomas’s Hospital, London, on Wednesday, 25 September.

DEBRA contributed £250,000 to the construction of the new centre at St Thomas's Hospital, which is specifically designed for people with genetic skin conditions, including EB.

Her Royal Highness met people who have benefitted from the state-of-the-art facility as well as the doctors and nurses who work there, including DEBRA Member Henry George, who has EB, and Consultant Dermatologist Prof Jemma Mellerio, who specialises in EB.

The Countess of Wessex heard how the centre was designed specifically for people with a number of complex genetic skin conditions, including EB, and that has transformed experience people suffering from the condition when they visit the hospital.

Using feedback directly from patients, the centre has been designed to meet their needs. For example, it has soft chairs and furniture with curved edges so that it does not catch on the fragile skin caused by EB.

The Centre also contains a comfortable communal space for patients to wait between appointments – something which is vital with skin conditions that can affect the whole body and clinic attendees may have to spend several hours at the hospital seeing different specialists. Work is also underway on a new sensory garden located outside the Centre, which will offer patients a quiet haven to reflect, socialise and relax when it opens later this year.

The new Centre has transformed patient experience. Before the facility opened, patients were seen in separate clinics around both the Guy’s and St Thomas’ sites, which has meant that they had to spend time travelling between appointments.

After a tour around the Centre, Her Royal Highness unveiled the plaque which will be displayed there.

Speaking at the unveiling, The Countess said: “It is a huge pleasure for me to open the Rare Diseases Centre. The testimonies we’ve heard from the patients with different rare conditions make it clear why this was so necessary.”

DEBRA CEO, Ben Merrett, added: “At a time when the NHS is struggling financially it is wonderful that a charity partnership with St Thomas’ Hospital has enabled the construction and development of the centre. St Thomas' Hospital is a Centre of Excellence in EB and now the facilities match the truly exceptional standard set by the clinicians working there. The opening of the Rare Diseases Centre represents a very significant commitment by the Hospital and the Trust to improve the quality of life and provide the best possible care to patients and families who suffer extreme daily challenges as a result of genetic conditions which affect every aspect of their lives."

Sir Hugh Taylor, Chairman of Guy’s and St Thomas’ NHS Foundation Trust, said: “We are incredibly proud to have this wonderful facility which is making a real difference to patients, many of whom are cared for by our clinical teams throughout their lives and have frequent hospital appointments.

 “It was a real privilege to introduce The Countess to the hard-working staff based in the Rare Diseases Centre and the patients whose lives we are helping by listening to their needs and ensuring we are treating them in the best possible way.

 “We are very grateful to the patients who were heavily involved in designing the Centre, the generous funders who made this possible and the dedicated staff who have worked hard for years to make the facility a reality and who now ensure provide excellent care to this special group of patients every day. The Centre means that they now have somewhere permanent that they can call home.”

 Thank you to all our supporters who made this project possible. You #FightEB.

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