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Did you know that around 50% of children with special needs have no definite diagnosis for their condition? If you are the parent of one of these children then you are probably all too aware of the...
View ArticleWhat parents told us . .
In 2009 Genetic Alliance UK got a small grant from Jeans for Genes to undertake a survey of families who had previously been involved with the SWAN (Syndromes Without A Name) charity. 149 surveys were...
View ArticleAre you involved in the “DECIPHERING DEVELOPMENTAL DISORDERS” study?
Over the next 5 years a study based at the Wellcome Trust Sanger Institute in Cambridge called ‘Deciphering Developmental Disorders (DDD) is aiming to use the latest genetic testing methods to help...
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Tommy’s Tale
Tommy was born 6 weeks early .He was very weak and cold. When he was born it took him a few weeks to begin to feed properly. At 4 days old it was discovered he had no response in his right ear and...
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My daughter & I. She has a rare chromosome disorder – 1q21.1 micro-deletion
My daughter, Chrissy, is 27. She has epilepsy, severe learning disabilities & challenging behaviour but can also be a delight! For years the cause of her problems was unexplained. Then in 2006 we...
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Online tips for living without a diagnosis
SWAN UK is delighted that Netbuddy (www.netbuddy.org.uk) now have a page dedicated specifically for parents to swap tips about living without a diagnosis. Families known to SWAN UK consistently tell us...
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My special baby girl
The birth Our story began on the day of Georgia’s birth, after a pretty easy first pregnancy I was told that I would need a c-section because the baby was breech. After Georgia was born I had about 30...
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Booking is now open for our information event at GOSH
To book your place please click here, for more information please contact Polina@geneticalliance.org.uk.
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The Great DDD Bike Ride
SWAN UK is delighted that the DDD study team decided to undertake some fundraising to help support the two charities working with many of the families involved in DDD – us and Unique. Various cycling...
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My special baby girl
The birth Our story began on the day of Georgia’s birth, after a pretty easy first pregnancy I was told that I would need a c-section because the baby was breech. After Georgia was born I had about 30...
View ArticleClik here to view.
Booking is now open for our information event at GOSH
To book your place please click here, for more information please contact Polina@geneticalliance.org.uk.
View ArticleClik here to view.
The Great DDD Bike Ride
SWAN UK is delighted that the DDD study team decided to undertake some fundraising to help support the two charities working with many of the families involved in DDD – us and Unique. Various cycling...
View Article
