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Understanding Rare Chromosome and Gene Disorders
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Emily Fee

Information Officer (Family Support)

Hello, I’m Emily and I’m very happy to be part of the Unique team. 

Before having children, I was Head of Department at a large property company. I was drawn to studying genetics following my own family’s experiences with fetal medicine and clinical genetics. A number of years later, I now have a PgCert in Genomic Medicine and am currently doing my MSc in Genetic and Genomic Counselling, alongside working part-time at Unique.

My second-year clinical placements were at the Centre for Fetal Care at Queen Charlotte’s Hospital and with the Wessex Clinical Genetics Service based in Southampton. My MSc research project aims to explore how insights from people affected by a genetic condition might help shape the development of patient-centred resources that meet their wants and needs.

I have two girls. My eldest has rare congenital conditions and is looked after at the wonderful Great Ormond Street Hospital. My husband’s family is also affected by a genetic condition.

Being able to listen, share information, and help connect families as part of my role at Unique is a real privilege. I’ve seen how important support can be, through time working at a school for children and young people with special education needs and as a support worker for adults with learning disabilities. I’ve also found support groups for conditions affecting my daughter to be invaluable – especially at times when I didn’t know where else to turn.