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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
  • New videos posted by The Fragile X Society, UK

    Fragile X Society, UK have posted a series of new...

  • Research Study: Sleep in Children with Angelman Syndrome

    Jayne Trickett, Mary Heald and Chris Oliver, researchers from the...

  • Sleep: A New Cerebra Guide for Parents

    A new guide for parents has been developed by researchers...

  • Research into Behaviour, Emotion and Movement in Males with Fragile X Syndrome

    Researchers at Coventry University and the Cerebra Centre for Neurodevelopmental...

upcoming events
  • Gatlinburg Intellectual Disability Conference

    The 51st Annual Gatlinburg Intellectual Disability Conference is being held on 11th-13t

  • The British Academy of Childhood Disability (BACD) Conference

    The BACD are hosting a series of conferences:


    Royal College

  • IASSIDD 4th Asia-Pacific Regional Congress

    The International Association for the Scientific Study of Intellectual and Developmenta

  • SSBP International Research Symposium

    The International Society for Behavioural Phenotypes will be holding their 21st Re

  • The National Autistic Society - Conferences

    The National Autistic Society run regular conferences and events bringing together auti

How can we help you?

Find out more I'm a...