Unique supports and informs anyone born w/a rare chromosome or gene disorder, their families and carers. Eurordis Patient Organisation Award winner.
Joined March 2009
- Tweets 4,838
- Following 1,517
- Followers 8,022
- Likes 2,077
1,235 Photos and videos
We'll be doing our next step count total shortly! If you've been taking on our challenge, get your latest step count in to us so we can include in next weeks total.
š£ rcd@rarechromo.org
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Jun 14
Two years ago, we started an exciting collaboration aimed at increasing the number of Unique guides. We are now very excited to announce that seven new guides to single gene disorders have been published.
Find them on our Disorder Guides page: rarechromo.org/disorder-guidā¦
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Jun 13
šWe are giving away a hoodie and teddy to the fundraiser that raises the most money AND the one that completes the most steps by the end of July!
If you haven't yet set up your fundraiser, you can get it up and running ready for #RareChromoDay here: justgiving.com/campaign/rareā¦
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Jun 12
Lucian has joined our 3 Billion #StepsChallenge, raising money by travelling at least 1 mile every day for 23 days - to represent his 23 sets of #chromosomes!
If you'd like to show support for Lucian, you can donate to his fundraiser here: justgiving.com/page/dawn-larā¦
#RareChromoDay
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Jun 11
With only two weeks to go until Rare Chromo Day, here's a few ways to get involved:
- Take on a fundraising challenge or donate
- Get your personalised 'I support' image
- Share our posts and your story
- Get your child's school involved
Learn more: rarechromo.org/rare-chromo-dā¦
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Jun 9
Our first step total is here. We're aiming to raise Ā£34,000 through sponsored challenges to reach a collective step total of 3 BILLION steps.
After week one, we have reached a step count of 409,622 and a total fundraising total of Ā£7,442! Share yours š rcd@rarechromo.org
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Jun 5
Get you personalised #RareChromoDay image NOW!
Marisa, our fantastic volunteer is helping us to create these Rare Chromo Day designs for anyone who wants one. Just share a photo and name you'd like on the design to rarechromomedia@gmail.com and we'll get one made for you.
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Jun 4
This #VolunteersWeek, we want to thank anyone who gives their time, energy, passion, lived experience and skills voluntarily to Unique.
Your dedication helps us to extend our support network, reduce #isolation and ensure our services meet the needs of our members.
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Jun 3
š² It's #WorldBikeDay. If you get out for a ride, let us know so we can add your ride to our 3 billion step count! Or use this opportunity to start a cycling challenge to help us raise Ā£34,000 to continue our vital support for our families!
Learn more: justgiving.com/campaign/rareā¦
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Jun 2
Lucie chose to run the #BrightonMarathon for Unique after learning about the work we do while studying genetic counselling.
Lucie smashed the marathon, getting her personal best during the event and raised a Ā£617 to help us continue our vital work. THANK YOU LUCIE!
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May 30
Did you know we produce Easy Read Guides, designed to make complicated written information easier to understand?
Our latest guides on 'Planning your future after school' and 'Transition from children to adult healthcare' are free to view online now:
rarechromo.org/disorder-guidā¦
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May 28
You can now watch a fantastic set of videos as part of the new Genes, Brains, and Breakthroughs campaign aimed to support families, improve wider public understanding, reduce stigma, and encourage more inclusive conversations.
Take a look: youtube.com/@genebrainbreaktā¦
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May 27
The London Landmark Half Marathon is up there as one of the most popular events, so claim your spot quick!
We have 5 places available for the 4th April 2027 on a first-come-first-served basis at Ā£30 for the promise of raising Ā£400 for Unique.
Book now: runforcharity.com/event/uniqā¦
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May 27
Trying to think how to help us with our 3 BILLION STEPS CHALLENGE?
Most active challenges can be converted to steps, so no matter what you decide to do, you'll help us to reach our goal. Click through the images to get some ideas.
So.. What will you do? rarechromo.org/rare-chromo-dā¦
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May 26
Meet Aria who lives with #FloatingHarborSyndrome, caused by an alteration in the #SRCAP gene.
'She's such a funny, kind, amazing little girl with a big heart who's loved by everyone she meets!'
You can learn more about the condition in our guide here: rarechromo.org/media/singlegā¦
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May 25
ONE MONTH UNTIL RARE CHROMO DAY 2026. We're raising Ā£34,000 through sponsored challenges to reach 3 BILLION STEPS - If you're feeling adventurous, we encourage the use of welly's!
Learn all about how to get involved here: rarechromo.org/rare-chromo-dā¦
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May 23
Another day, another spotlight on some of our incredible fundraisers. This time we want to show appreciation to Lucy and Jimbo who took on the #ChesterHalf for Unique.
They have currently raised Ā£1,500, smashing their original target. Support them here: justgiving.com/page/lucy-jimā¦
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May 21
A special shout out today goes to Laith, who recently oversaw Kool Kids' popular stall. He spent the day in his directors chair making sure everything ran smoothly.
A big thank you to everyone who stopped by to purchase some goodies.
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May 20
We are so honoured to be Kool Kids Club's charity of the year this year, they recently held another successful fundraising stall at their local carnival raising vital funds to support our community. Thank you for your continued support, it means the world!
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May 19
Recently these young entrepreneurs held a street sale fundraiser to raise money for Unique. They did a fantastic job raising money and chatting to passers by to spread the word about our small charity. We love to see such imaginative and unique ways our community supports us.
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