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If you have arrived at FIND you are likely to be a parent, carer and/or professional who wants to learn more about a rare genetic syndrome that affects your child or someone you know.

In our experience...

When a person receives a diagnosis of a genetic syndrome, families and carers can respond in many different ways. Families need to think through what a diagnosis means in their own time.  Some families may prefer to learn everything they can about a syndrome straight away, whereas others may prefer to gather information as they go, because having too much information can feel overwhelming.  Many families have described feeling split between these two positions and moving back and forth between them.

FIND is...

driven by the aim of providing current research findings to
families and professionals in an bite-sized format.

latest news
  • Mental health difficulties in children with learning disabilities

    Overview of the presentation

    This presentation was delivered by Chris...

  • Rubinstein-Taybi Syndrome Video Release

    Rubinstein-Taybi syndrome (RTS) is a rare genetic syndrome affecting approximately...

  • Bardet-Biedl Syndrome Press Release

     

  • Anxiety in Cornelia de Lange syndrome

    Presenter: Dr Hayley Crawford

    Date of presentation: 28th October 2017

    ...

upcoming events
  • FPWR Family Conference 2018

    The Foundation for Prader Willi Research conference will be held at Caesar's P

How can we help you?

Find out more I'm a...