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The wait is over! Our very own pop song for Rare Chromosome and Gene Disorder Day, “Touch the Sky,” is out now! 🌟 We have made the song and video to celebrate our community and we hope you’ll love it as much as we do.
Click below to play the video and you can search for “Unique Touch the Sky” on all major song streaming platforms. 🎶
We have co-created this song and video with our members using their words, images, and videos to highlight their experiences and emotions throughout their journey, and how it feels to be part of this special community. The song and video have been created to be as accessible as possible, by including elements of rhythm and melody, simplified lyrics, sign language and captions.
We hope to continue growing our connected community and would appreciate it you could share it with friends, family, and loved ones on social media. 💖 #TouchTheSky #RareChromoDay
Thank you to our amazing community for getting involved and sharing your unique moments.
Maybe your employer has ‘lunch & learn’ sessions – or maybe you can suggest they do! Giving a presentation to your colleagues is a great way to raise awareness, tell people about rare chromosome & gene conditions and the work of Unique. You can even run a cake sale alongside it to raise funds. Alternatively, why not ask your child’s school if you can go in and do an assembly or present to a class. Our presentation for ‘primary children’ (i.e under 11 years) uses simple, age appropriate imagery to talk to them about this complex topic. You can download the presentations below. There’s also an example of a flyer used by parents who’ve given assemblies and held cake sales at their child’s schools (pictured below). Click here to download as a pdf to print or email. If you have problems downloading them, or need some guidance, just email us at info@rarechromo.org
If you’d like to download the flyer below as a PDF to print out to give to your child’s school, click here
A great way to raise awareness is to take on a challenge. This year, we’re asking you to walk, push or run a mile a day from June 1st until Rarechromoday ….. and beyond, if you can! We want this to be a special way to celebrate all our members, whatever their ability.
This is a challenge for all the family so decide what you’re going to do, set up a page at www.justgiving.com/unique – write about what you are doing and why and then share your page on socials, Whatsapp, email – everywhere!
On Thursday June 13th – Rarechromoday – show your support by wearing something Blue & Yellow…. it could be a Unique wristband, t-shirt, or just make a donation at https://rarechromo.org/donate/ (we suggest £5) and wear some stripy socks or a scarf, anything you like. Pick up some Unique merch at the Unique shop, too: https://unique-chromo-shop.myshopify.com/ (Please note. deliveries are from the UK so if you are outside the UK please allow plenty of time for your order to arrive!).
We often see members of our Facebook groups asking questions relating to their family member’s rare chromosome or gene disorder. We totally get that genomics can be tricky to navigate and particularly thing like what specific terms mean, what genetic test results can show and what the future might hold. In a first for this year’s awareness day, we’re holding a Q & A via Zoom for Unique families wherever they are. Join in, ‘meet’ the Unique team, ask some questions and take away some knowledge that you can share with your family, friends, colleagues, teachers at your child’s school, etc. It’s going to be at 1pm (UK time) on June 13th and we’ll share details soon on how you can sign up.
Tell, tell tell! If you only tell two other people about rare chromosome & gene disorders and Unique’s work, you’ll have raised awareness. Even just telling someone to have a look at www.rarechromo.org will make a difference. Tell them to tell two people too! You can also give them our background information sheet to pass on…. see below or click here to download it as a pdf.
Why not change your Facebook Cover Photo to the one below, to show you’re supporting Rarechromoday? Just press on it to download it if you’re on a mobile or right click if you are on a PC. Or you could share one of our Instagram posts or stories. Just head to our Facebook page at: https://www.facebook.com/Uniquerarechromosomedisordersupportgroup where we’ll be sharing all things awareness day related. Don’t forget to use #rarechromoday
Or, you can save and use these designs below on your Instagram, Facebook, X or LinkedIn pages, to show you, or your company support Rare Chromosome Disorder Awareness Day. We’ll also be sharing these and other posts on Unique’s social media, e.g. https://www.instagram.com/unique_charity/
At work, school or at home, a cake sale always goes down well…after all, who doesn’t love a yummy cake? Unique’s bake sale kit makes it easy to organise. Click here to download it for free.
We also produced a reel to show you how you can do it: https://www.instagram.com/reel/CtRpi-6ADE7/
We’ve created two awareness day posters, pictured below, to download and print to display or give out, or to share on email or socials. Click here for the first poster and click here for the second one. If you’d prefer them emailed to you, just email us at info@rarechromo.org