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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
  • Professionals Shaping Neurodevelopmental Disorders Research

    Professionals who work within the field of neurodevelopmental disorders are invited to

  • Neurodevelopmental Disorders Annual Seminar

    The Neurodevelopmental Disorders Annual Seminar will take place on Th

  • 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

How can we help you?

Find out more I'm a...