Understanding Rare
Chromosome and Gene Disorders

Awareness Week

This year is the 6th Global Rare Chromosome Disorder Awareness Week which will run from Sunday 16th – Friday 21st June.

#shinebrighttogether

We want to celebrate and educate……shine bright together and reach out to those who might not have heard of us and need support and we’re celebrating all the unique children and adults and their amazing achievements. So many people haven’t heard about chromosome & gene disorders…..yet! This week is about changing that. Help us #shinebrighttogether for all those living with and affected by rare chromosome and gene disorders.

Below are the brand new Awareness Week 2019 Logo and Facebook banner. To download for use on your own Facebook profile, please just click the logo (for use as your profile pic during awareness week) and the banner or click here to visit our Facebook page:

    

Please get involved and help to spread the word.  Scroll down the page for ideas on how you can help and If you have any questions, please email caroline@rarechromo.org  and keep an eye on the Unique Facebook page for updates too.


Each day has a theme….

To help you get involved, we’ve given each day a special theme to help you get involved and spread the word in your own way:

This year’s daily themes are:

Selfie Sunday – snap and share a pic of you & your child (or yourself if you are an adult with a rare chromosome disorder) – perfect for social media

Motivating Monday – a day to shout about your achievements or your child’s achievements – this really helps motivate others

Telling Tuesday – a day to educate tell people about rare chromosome and gene disorders and what life’s like

Warrior Wednesday – recognise someone ( a ‘chromo warrior’) who battles the odds or has gone the extra mile to support you or your family

Thankful Thursday – focus on the positives: let everyone know what you have to be thankful for

Funday Friday – have some fun spreading awareness and doing some fundraising: eat cakes, dress down, run, walk or push, skydive…..get involved!

For more details about the themes of the day, click here


Unique’s Big Blue Baking Kit

Cake sales have always been a big hit with people fundraising and our Baking Kit is sure to help yours be a huge success…..

Big Blue Bake Sale Kit and Poster

To download details about the Baking Kit, plus a poster to use for your bake sale, just click here.  To give your cake sale and stylish and  totally ‘unique’ feel, we’ve also designed a selection of cupcake flags and cupcake toppers.

Click here for the Cupcake flags (with instructions for use) or Click here for the Cupcake toppers

Click here to order edible rice paper toppers from www.mycupcaketoppers.co.uk/products/unique

If you need some help or guidance, just contact Caroline on email to caroline@rarechromo.org


Competition: Colour in Gene the Bear!  

Unique’s very own bear, Gene, looks a little bare and needs some colour….

Why not get your children involved in our Gene the Bear colouring competition? Better still, get their whole class, or school involved! It’s just £1 per entry to enter and there are prizes to be won (and it’ll  keep the kids occupied for half an hour!). We want entries from children with chromosome and gene disorders as well as their siblings, their classmates at school or nursery, their friends and anyone else. So what are you waiting for? Click below to download the competition…..

Click here to enter the 2019 Gene the Bear Colouring Competition 

When you’re ready, just email a scan of the finished, coloured-in version to caroline@rarechromo.org and she’ll tell you how to pay the entry fee or affix £1 to a paper copy and post it to Caroline Pocock, Unique, The Stables, Station Road West, Oxted, UK, RH8 9EE


Totally ‘Unique’ Merchandise

Stylish and totally Unique? Then these are for you! See the picture below…….What better way to raise awareness?

Wristbands in blue or yellow, locker/trolley coin keyrings and fridge magnets are all just  £2 each plus postage.  We’re happy to ship outside of the UK too.

To order yours today, email craig@rarechromo.org and he’ll give you the details.

 


Be it an Assembly at School, Lunchtime at Work, a Talk at a Group, why not give a short presentation?

We’ve produced several presentations which lots of you have given successfully in a variety of places, from schools to clubs & societies. It’s a very successful way to let people know about Unique and Awareness week is the best time to do that.

We’ll provide you with all you need and even tell you what to say….We’ve kept it deliberately brief and jargon-free so you won’t need a degree in genetics! We even have a presentation for young children. Just email: craig@rarechromo.org or caroline@rarechromo.org


How to get hold of some awareness-raising materials

If you’re planning an event and would like some awareness-raising materials, e.g. Unique flyers or balloons, please contact us:

Email: craig@rarechromo.org or caroline@rarechromo.org

Tel: +44 (0)1883-723306