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Research into hospital experiences with CdLS

Birmingham University are conducting a research project that some of you may be interested in. Please see details below:

Do you or someone you know have Cornelia de Lange syndrome?

If yes, please read more! Researchers at the University of Birmingham are doing a project about the experiences – good and bad - of hospital clinics for deafblind people with rare syndrome/diseases.
We would like to talk to children (and their parents if under 16) and adults who have these syndromes. We would also like to hear from the parents/carers of people who have one of these syndromes but are unable to give their own permission (consent) to take part in the research. People must know that they have the syndrome – it must not be a secret. For example, if they have Cornelia de Lange syndrome this must be something you would talk about when they are there, though they may not understand about the syndrome.