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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

  • PWS Family Conference

    The 2021 Virtual PWS Family Confernce will take place on the 5th-8th of October 2021, d

  • 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...