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Charity to fund new nursing post for children with rare diseases

Patients at Birmingham's Children's Hospital will help to design a new nursing role

Patients with rare diseases being treated at a children’s hospital in the Midlands will be given a unique chance to help design a new nursing role.

Birmingham Children’s Hospital NHS Foundation Trust, which cares for more than 9,000 children a year, has secured funding from Roald Dahl’s Marvellous Children Charity to create a new post. This will focus exclusively on rare diseases in children.

The Roald Dahl rare diseases clinical nurse specialist role will be funded by the Roald Dahl charity for the first two years and by the trust for a further three years.

A series of interactive sessions will be held with patients and their families to help the hospital’s management design the role.

The trust's director of strategy and planning Matthew Boazman said: ‘From conversations we have already had with patients, we recognise that many of them feel isolated when trying to deal with a rare disease. This new post will help plug that gap and give patients much-needed help and advice in accessing psychological services, peer support groups and educational material to help them manage their conditions.

‘Further meetings with patients will help us prioritise the areas the new nurse will need to focus on initially to provide the greatest support.’

The post will be the 51st Roald Dahl nurse post created by the charity.

For further information on the Roald Dahl charity for seriously ill children, click here

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