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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
  • Gestures and communication in Cornelia de Lange syndrome

    A new paper has just been published by researchers at...

  • Be Well Checklist

    Helping parents, carers and professionals to reduce challenging behaviour and...

  • Research update - anxiety interventions for children with a diagnosis of autism

    Researchers at Aston University are working with the Cerebra Network...

  • Behaviour Across the Lifespan in Cornelia de Lange syndrome

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

upcoming events
  • Rubinstein-Taybi Syndrome - Online Event

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

  • NFXF International Fragile X Conference

    The NFXF International Fragile X Conference is being held on 14th-17th July 2022, and w

How can we help you?

Find out more I'm a...