Developing Research into Noonan Syndrome – new questionnaire from the ERN-ITHACA

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The University of Manchester Centre for Genomic Medicine as part of their membership of the European Reference Network on Congenital Malformations and Rare Intellectual Disability – (ERN-ITHACA) have produced a survey aimed at finding out more about the research experiences and needs of carers and patients. The results of the survey will be used to inform the network’s research agenda over the next three years and they would really like some input from the Noonan Syndrome community. The questionnaire can be accessed at: – one of our trustees has already completed it and found it straight forward and well designed. Please help if you can.