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Date: 30 June 2024

Time: 20:25

Image: staff from the Centre for Rare Diseases (CfRD)

10,000th patient at Centre for Rare Diseases

Story posted/last updated: 06 November 2017

A bespoke facility delivering care to people with rare diseases has welcomed its 10,000th patient since opening in 2015.

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.

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, in 2017, 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 CfRD 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.”

 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.

Birmingham Children’s Hospital (BCH) will soon open a Children’s Centre for Rare Diseases, making the West Midlands the first region to have specialised rare disease centres across the whole age range.

For more details of the rare diseases treated at the centre and their clinical specialties, please visit the 'Centre for Rare Diseases' page.

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