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Where scientific discovery rapidly becomes medical reality, for the benefit of human health

The Institute of Translational Medicine (ITM) is a place where scientists, researchers, clinicians and industry partners can work together to turn medical science into innovative patient and healthcare system applications, rapidly, rigorously and seamlessly.

The Centre for Rare Diseases (CfRD) is a purpose-built outpatient facility sited at QEHB providing specialist MDT care to patients with rare diseases or rare syndromes.

  • Purpose-built outpatient facility supporting highly specialist multi-disciplinary care for patients with rare diseases or syndromes.

  • Growth in activity with all clinics restored post-pandemic, exceeding previous years’ activity levels.

  • Houses around 100 different clinics, including multi-disciplinary clinics like the Tuberous Sclerosis Clinic.

  • Provides a “one-stop” appointment experience, offering multiple tests.

  • Supports collaboration with research teams for rare and non-rare studies.

The CfRD activity has continued to grow with restoration of all clinics following the pandemic across all consultation modes, with activity levels for 23/24 exceeding previous years. The CfRD currently houses around 100 different clinics, some of which are multi-disciplinary in nature. An example of this is the Tuberous Sclerosis Clinic where the patients will see consultants from renal, neurology, urology, pharmacy as well as a Clinical Nurse Specialist. Some clinics may also have a dietitian, physiotherapist or a speech and language therapist present. The CfRD is unique in that we provide a “one stop” shop appointment; depending on the clinic pathway, there is the option to have an electrocardiography, echocardiography, fibroscan, spirometry and blood tests in one visit, the majority of which are carried out by the CfRD nurses.

There have been several highlights throughout the year; the Cystinosis clinic has been awarded National Designation, the set up and delivery of The Institute of Transplant Oncology Clinic and the transfer of the Vasculitis clinic. In addition, the first clinic in the UK for patients with the ultra-rare condition of Familial Chylomicronaemia Syndrome in the UK has taken place. The CfRD continues to support collaboration with research teams for the delivery of rare and non-rare studies within the CfRD and ITM CRF. There was also a successful Life Arc application with the aim of setting up a Rare Disease Registry.