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New report into rare diseases published

8 December 2010

A new report entitled ‘Experiences of rare diseases: an insight from patients and families’ has been published by Rare Disease UK.

The report looks at the views and experiences of 600 patients and families affected by over 100 different rare conditions, covering a wide range of topics from research to diagnosis, and access to care, information, support and treatment.

Great Ormond Street Hospital treats many patients and families affected by rare diseases each year.

Download a full copy of the report.

Contact information:

For further information please contact Hayley Dodman, Great Ormond Street Hospital press office on 0207 239 3126 or email dodmah@gosh.nhs.uk

For genuine and urgent out of hours call speak to switchboard on 020 7405 9200

Notes to editors

Great Ormond Street Hospital for Children NHS Trust is the country’s leading centre for treating sick children, with the widest range of specialists under one roof.

With the UCL Institute of Child Health, we are the largest centre for paediatric research outside the US and play a key role in training children’s health specialists for the future.

Our charity needs to raise £50 million every year to help rebuild and refurbish Great Ormond Street Hospital, buy vital equipment and fund pioneering research. With your help we provide world class care to our very ill children and their families.

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