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10,000th patient treated at Centre for Rare Diseases

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A bespoke facility delivering care to people with rare diseases has welcomed its 10,000th patient since opening just over two years ago.

The Centre for Rare Diseases (CfRD) at University Hospitals Birmingham NHS Foundation Trust (UHB) caters for a range of complex rare diseases across 19 specialties.

The Queen Elizabeth Hospital Birmingham Charity, the Charity which supports patients at the hospital, fundraised £1 million to develop the Centre and has now delivered over and above for 10,000 patients with rare diseases in the West Midlands!

There are now 76 clinics available at the CfRD, which range in frequency from once a month to once every three months.

Patients are able to see all relevant specialists and the multi-disciplinary team in one visit, thanks to the coordinated one-stop service available at the centre. This is particularly important for those who have to travel long distances, particularly if they have mobility challenges.

The CfRD was officially opened by Dame Julie Moore, UHB Chief Executive, earlier this year, as part of Rare Disease Day, an annual event to raise awareness about the work being done to diagnose, treat and cure rare diseases.

Dr Graham Lipkin, Consultant Nephrologist and Centre for Rare Diseases Lead, said: “It’s rewarding to see the number of patients receiving care and treatment at the centre grow over a relatively short period.

“Our unique one-stop service really improves a patient’s visit and hopefully takes some of the burden from them, as they know all their appointments will be in the centre, on the same day.”

“Patients can now also participate in research that explores new treatments and could improve their condition.”

The Centre for Rare Diseases has charity-funded spacious and adolescent-friendly waiting and treatment rooms, plus fixtures and fittings which are sensitive to disability. There are also areas for patients to interact with each other, as well as for clinicians and researchers seeking to understand more about rare diseases in order to improve treatments.

There are an estimated 7,000 rare diseases, many of which are inherited, with an estimated 1 in 17 people likely to be affected by a rare disease in their lifetime.

Professor Jane Dacre, president of the Royal College of Physicians, recently praised the work of the CfRD, the first centre of its kind in the country.