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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
  • Summary Article: Anxiety in Cornelia de Lange syndrome

    Researchers at the Cerebra Centre have written a guide about...

  • Anxiety guide is 'Highly Commended' by BMA

    Hayley Crawford, Rachel Royston and representatives from Cerebra attended the BMA...

  • Research Study: Understanding anxiety and negative emotions in fragile X syndrome

    Researchers at the Cerebra Centre for Neurodevelopmental Disorders (CCND),...

  • ASM 17 French Smith-Magenis Support Group Annual Conference

    Lucy Wilde...

upcoming events
  • Fragile X Syndrome Awareness Day

    The Fragile X Society are arranging flash mob dances to raise awareness of fragile X on

How can we help you?

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