Journeys through genomics

We are leading interdisciplinary studies that explore ethical, legal and social issues in rare conditions research. Our work spans topics such as participants’ experiences of hybrid clinical-research initiatives, along with the everyday challenges individuals and families face living without a diagnosis. We are contributing to the flagship Rare Disease Research UK programme.

Themes:  Experiences of personalised medicine, Diagnosis and treatment

Resources

The challenges of living with a rare disease diagnosis

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Who’s ‘the patient’ in genomic medicine?

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Navigating a genetic diagnosis

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Making it Personal

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