Rare Chromosome Disorder Awareness Week 2-8 June

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This week is the first ever international Rare Chromosome Awareness Week 2-8 June.

We want to tell the world what rare chromosome disorders are, how they affect our families and how Unique can help.

Throughout the week we will be sharing messages by email, press, Facebook and twitter, through work places, schools and hospitals.

Lots of families are also sharing pictures of their children via Facebook, Twitter, Flickr etc. to celebrate Awareness Week.

The aim is for greater understanding and support for families affected by the many challenges rare chromosome disorders bring. We also want to create a better understanding of the great love and joy we feel for our children and adults with rare chromosome disorders and the strength we gain from other parents and families like ours.

If you would like to support the work of Unique in helping families through diagnosis, linking them to similar families, publishing our guides to individual chromosome disorders and raising awareness through events like this week, please consider making a donation. Please visit www.rarechromo.org/html/DonateNow.asp to donate online. You can donate in various currencies, including Pounds Sterling, US Dollars and Euros.

If you are in the UK, you can now also donate by text message direct from your mobile.
Just text UNIQ11 plus the amount you wish to donate up to a maximum of £10 to 70070. So, to donate £10 you need to type UNIQ11 £10 and text it to 70070. Remember to leave a space between UNIQ11 and £10.

Best wishes from all of us at Unique.

This week is the first ever international Rare Chromosome Awareness Week 2-8 June.

We want to tell the world what rare chromosome disorders are, how they affect our families and how Unique can help.

Throughout the week we will be sharing messages by email, press, Facebook and twitter, through work places, schools and hospitals. Follow us #rarechromoweek and @Unique_charity

Lots of families are also sharing pictures of their children via Facebook, Twitter, Flickr etc. to celebrate Awareness Week.

The aim is for greater understanding and support for families affected by the many challenges rare chromosome disorders bring. We also want to create a better understanding of the great love and joy we feel for our children and adults with rare chromosome disorders and the strength we gain from other parents and families like ours.

If you would like more information, please visit www.rarechromo.org and if you'd like to support the work of Unique in helping families through diagnosis, linking them to similar families, publishing our guides to individual chromosome disorders and raising awareness through events like this week, please consider making a donation. Please visit www.rarechromo.org/html/DonateNow.asp to donate online. You can donate in various currencies, including Pounds Sterling, US Dollars and Euros.

If you are in the UK, you can now also donate by text message direct from your mobile. Just text UNIQ11 plus the amount you wish to donate up to a maximum of £10 to 70070. So, to donate £10 you need to type UNIQ11 £10 and text it to 70070. Remember to leave a space between UNIQ11 and £10.

Best wishes from all of us at Unique.

Our son was recently found to have a rare chromosome disorder after a couple of years of various development delays and health issues. Unique were immediately able to provide what (little) information there is on this disorder which is invaluable when the health professionals have very little to offer you yet. You know that there is someone out there trying to find out what they can about these disorders, collect together any research that exists, and make it available to families affected by it. In our brief experience of them we think Unique is great and deserves all the support they can get!

Hear hear

Unique was the single most helpful source of information and support to us when our daughter was diagnosed. I read loads in advance of our genetic "counselling" meeting and threw our geneticist a bit when I asked him whether DD's chromosome disorder was caused by uniparental disomy

Didn't know about this, thank you so much for letting us know. Bluechick has a rare chromosome disorder which has affected her in a number of ways.

The cause of her overwhelming cuteness is a mystery however.

Unique is an amazing resource, it was the first place that our genetics nurse directed us when ds started having testing for genetic conditions - he has a likely diagnosis if a rare genetic condition, and is part of 2 genetics studies.

(Like blue chick, he also has a form of rare super cuteness - see photo!)

As others have said, Unique have proved invaluable since my daughters diagnosis with Tetrasomy 9p last year. They were able to provide me with all the information available and just as importantly, put me in contact with other families in the same or similar situations, the only people who really understand what it is like. After having to google the condition as our geneticist who gave the diagnosis to us had given us so little info, I don't know where we would be without Unique.

Oh, and as you can see she also is a chromo cutie !

Purple and hazey you hAve total cuties

Love the phrase chromo cutie!

Might have to steal that. And yes, both mini hazey and little purple are textbook examples of the chromo cutie condition.