Centre of excellence for patients with rare diseases

There are over 6,000 rare diseases classified in the UK. Of these, 80% have a genetic basis and surprisingly, one in 17 of us will be affected by a rare disease in our lives.

It is recognised nationally that at present, the specialist care for patients with rare diseases needs to improve. These patients can require the input of a large number of various medical, nursing and therapeutic specialists.
QEHB Charity’s Centre for Rare Diseases appeal raised £1 million to develop a centre of excellence for rare diseases at University Hospitals Birmingham NHS Foundation Trust.

The Centre for Rare Diseases is based within the new Institute of Translational Medicine (ITM) which is dedicated to developing and implementing ground-breaking treatments, technologies and techniques to benefit patient care. It brings together multi-speciality and multi-disciplinary teams to deliver care of patients with rare diseases and provides highly-organised, one-stop clinics where patients can undergo pre-planned diagnostic tests and see all specialists and the multi-disciplinary team relevant to their care, in one visit.

Now, we need your help to continue offering this support to patients and families.

Justine Davy, Head of Fundraising at QEHB Charity, said: “We are extremely pleased to help provide this one-stop clinic for patients with rare diseases. On behalf of the Charity I’d like to say a huge thank you to everyone who donated to our appeal.

“Now, we need your help to continue offering this support to patients and families, by providing ‘added extras’ over and above what the NHS can provide, including the resource area for patients and families, providing Wi-Fi, refreshments, computer games and iPads, and facilitating patient support groups.”

To find out more or to make a donation, please visit www.qehb.org/centreforrarediseases