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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
  • Behaviour Across the Lifespan in Cornelia de Lange syndrome

    A new review paper has just been published by Dr...

  • Rubinstein-Taybi Syndrome - Online Event

    The UK...

  • Research summary: Executive functioning in Cornelia de Lange syndrome

    Researchers from the University of Birmingham have recently written an...

  • Mental health difficulties in Williams, Prader-Willi & fragile X syndromes


    A recent paper published in 2019 has described and...

upcoming events
  • Rubinstein-Taybi Syndrome - Online Event

    The UK Rubinstein-Taybi Support Group is hosting an online event on 24th of April 2021

  • SSBP International Research Symposium

    The 23rd Society for the Study of Behavioural Phenotypes International Research Symposi

  • EAMHID 13th Congress 2021

    The 13th European Association for Mental Health in Intellectual Disability Congress wil

  • ICIDD 2021

    The International Conference on Autism, Intellectual and Developmental Disabilities wil

  • ICIDD 2021

    The International Conference on Intellectual and Developmental Disabilities is held on

How can we help you?

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