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 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.
QEHB Charity, with generous donations from groups, companies and individuals, funds ‘added extras’ that the NHS can’t provide, as well as the ongoing running costs of the centre. This includes funding the resource area for patients and families; providing Wi-Fi, refreshments, computer games and iPads; and facilitating patient support groups.
The Centre for Rare Diseases has a spacious and adolescent-friendly waiting area and treatment rooms, plus fixtures and fittings which are sensitive to disability. There are also areas for...Find out more >
A teenager struck down by a rare brain disease lost all her memories – apart from the recollection of her teddy bear. Rosie Paley, 19, had no memory of her two young brothers and couldn’t...Find out more >