<p>Salli and Nick talk about their experiences with their son Sam, who has Smith-Magenis Syndrome. This video focuses on diagnosis and the need to make professionals aware of this rare condition. </p>

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Salli and Nick talk about their experiences with their son Sam, who has Smith-Magenis Syndrome. This video focuses on diagnosis and the need to make professionals aware of this rare condition. 

 

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Welcome to FIND

Parents, carers, siblings or family members who arrive at this website for the first time may have come here because their child, a relative or the person they care for has recently received a diagnosis of a rare genetic syndrome.  This diagnosis may have been given soon after the person was born or, for some, receiving a diagnosis may have been a much longer process.

We have spoken to many families who have told us that whilst they want clear, accurate and balanced information about the genetic syndromes, it can be overwhelming to receive lots of information at once.  Furthermore, receiving information will be an emotional experience and different families will respond in different ways.

FIND is structured to provide the information families have requested in a bite sized format so families (and professionals) can work through this information at their own pace.   To find out more choose the syndrome you are interested in from the drop down menu above.  Alternatively, you can ask a question about a syndrome using our interactive database.

If you are new to the website and have not already contacted the relevant syndrome support group you can find the links to these groups below.  These groups provide information and an excellent support service through which  families can make contact with others who are caring for or a supporting child with a genetic syndrome.   You may be interested in this short film of parents discussing their experiences of contacting a support group for the first time.

 

 

Angelman Syndrome Support Eductaion and Research Trust

Cornelia de Lange Foundation UK and Ireland

Cri du Chat Support Group

The Fragile-X Society

Prader-Willi Association UK

Smith-Magenis Association

Cerebra

 

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