Centre benefits patients living with rare diseases
(Pictured: original concept art for the new Centre for Rare Diseases)
More than 1,100 patients have already undergone treatment in the few months since the doors opened at the Centre for Rare Diseases (CfRD).
The new facility, based in the Heritage Building (QE Hospital) brings together a superregional integrated, multi-speciality and multi-disciplinary centre of excellence for care of patients living with rare diseases.
The idea is that patients requiring specialist care can attend one-stop clinics to see all relevant clinicians in one visit.
An extensive fundraising campaign, coordinated by QEHB Charity with support from the Birmingham Mail, helped provide extra equipment for the facility, over and above core NHS facilities. Dr Graham Lipkin, Consultant Nephrologist and clinical lead for the CfRD said: “The centre is a unique asset to the Trust. We now have 34 rare disease clinics running nad have seen over 1,100 patients since opening.
“The Trust treats a range of rare conditions, and many of these patients have conditions that affect multiple organs.
“This means they need treatment from a variety of clinicians who fall across divisional specialities. The transfer of rare disease clinics into the centre is an opportunity to review the way services are delivered and change the way we work to deliver a first-class, one-stop service that meets the needs of patients.”
The CfRD is part of the Institute of Translational Medicine, which works in collaboration with the University of Birmingham, Birmingham Children’s Hospital and the Women’s Hospital. It brings benefits for industry, the economy and patients through the rapid assessment of cost-effective new drugs and medical devices.
Rare Disease Day, which this year takes place on 29 February, was founded to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.
Come along to the atrium a t the QE, on February 29 between 10am and 3pm to find out about the Centre for Rare Diseases, based on-site of the Queen Elizabeth Hospital Birmingham. QEHB Charity volunteers will be on hand collecting loose change and selling charity merchandise, as well as providing information about the difference your support can make to patients living with rare diseases.
To find out more about the various funds QEHB Charity supports, click here.
