Undiagnosed Children’s Day 2014

Friday 25th April is Undiagnosed Children’s Day 2014!

Based around the the theme ‘#itsamystery’ to highlight the fact that many undiagnosed children are medical mysteries, people around the country will be getting together to fundraise or raise awareness in their local areas – some are holding quizzes, some are dressing up as detectives or others are just having good old fashioned bake sales.

It’s not too late to get involved!

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Make a donation – for the price of a cup of coffee you could make a real difference to the lives of the families we support.

– Take part in, and help spread the word about our fabulous Twitter quiz (prizes to be won on the hour throughout the day).

– Change your Facebook and/or Twitter cover image. Retweet and share our posts using the #itsamystery hashtag.

– Join in our blog hop by adding a post you have written either about your experiences of raising a child with an undiagnosed genetic condition or just showing your support for those who are.

 

 

You can also download and print off props from our fundraising pack to have your very own detective photo shoot – don’t forget to post your pictures on our Facebook page! (if you have any issues downloading the pack please email fundraising@geneticalliance.org.uk and they can email you a pack)

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And lastly, but most definitely not least, Don’t also forget to watch, enjoy and then share our video!

For thousands of families across the country, the future is the biggest mystery of all.  They are the families of children with undiagnosed genetic conditions.  The families living with a syndrome without a name.

  • 1 in 25 children is born with a genetic disorder.
  • It is estimated that 50% of children undergoing NHS genetic testing may not get a diagnosis.

Many of the children that we work with have complex medical needs and/or learning disabilities.  Yet the reasons for their symptoms remain an ongoing mystery.  With no diagnosis, or prognosis, the families of undiagnosed children can be left feeling extremely isolated and alone.

This is where SWAN UK (syndromes without a name) comes in.  We are bringing families together through our online community and our family fun days.  We are developing relevant information and working with medical professionals to highlight the unique issues faced by these families.

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But we have such a long way to go.  It is estimated that 6000 children with undiagnosed genetic conditions are born every year. 

We need to be there for everyone who needs us. 

And to do that – we need your help so please help us spread the word or make a donation to support our vital work.

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