Undiagnosed genetic condition information event

Does your child have global development delay (GDD) or learning/physical difficulties that are unexplained?
Has your child had genetic tests that have come back negative or of unknown clinical significance?
Is your child taking part in genetic research such as DDD or 100,000 Genomes Project?
If you answered yes to any, or all, of the above questions then come along – places are free but booking is essential. Email: [email protected].uk or call (0)20 7831 0883
The event will take place at Bristol Royal Infirmary, Upper Maudlin St, Bristol BS2 8HW.
Speakers include Sue Burrows, the parent of a child with an undiagnosed genetic condition and representatives from West of England NHS Genomic Medicine Centre and Clinical Genetics at University Hospitals Bristol. Talks will cover:
  • Why are some genetic conditions so hard to diagnose?
  • What are genetic tests? Why does genetic testing take so long?
  • What is it like raising a child with an undiagnosed genetic condition?
  • Update on Deciphering Developmental Disorders (DDD)/100,000 Genomes Project.
You will also be able to meet other local families with similar experiences and the SWAN UK Parent Rep for Bristol, Louise James.

Places are limited and booking is essential so please email [email protected] to secure your place.

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