SWAN (Syndromes without a Name) Event

Undiagnosed Genetic Conditions Information Event

30th January 2018, 10am – 2pm, The Park Inn, Cardiff City Centre, CF10 2JH (opposite the Motorpoint Arena).

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 with results of unknown clinical significance? Is your child taking part in, or are you hoping they will take part in, genetic research such as Deciphering Developmental Disorders (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: Info@undiagnosed.org.uk or call 02078 310883.

Speakers include a parent of a child with an undiagnosed genetic condition and representatives from the All Wales Medical Genetics Service, Wales Gene Park and 100,000 Genomes Project Wales. The 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 life 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 local SWAN UK Rep Amy Griffiths

Visit SWAN UK to find out more about their work.