'We are taking part in the Manchester 10k to raise money for Unique. Our daughter has a 10q deletion, and this charity has been such an important source of support for families like ours.
If anyone is able to donate, we would be so incredibly grateful.'
https://ow.ly/InCb50YNlJt
Caroline and family raised a whopping £5,850 during Sophie's first birthday fundraiser.
The group took on a 10km kayak to support families affected by rare chromosome and gene disorders. Thank you to the kayak team and to every person who donated to Sophie's birthday fundraiser.
Today is Tetrasomy 18p Day!
April 18th is dedicated to raising awareness about the rare genetic condition, tetrasomy 18p, which involves having four copies of the short arm of chromosome 18. Help us raise awareness by sharing our post.
#Tetrasomy18pDay #UniqueCharity #Tetrasomy
'What if my child has a rare chromosome AND gene disorder?'
You asked, we listened. We now stock sunflower lanyards with a card that reads 'I have a Rare Chromosome and Gene Disorder'. Head to our shop to get yours today.
https://ow.ly/8b7L50YGsA7
Today is International #WolfHirschhornSyndrome Awareness Day. Try these charities for support:
North America: 4p- Support Group
Spain: @AESWH
Italy: Associazione Italiana sulla Sindrome di Wolf-Hirschhorn
UK and Ireland: Wolf-Hirschhorn Syndrome Trust
Share more below 👇
THANK YOU KARIS for raising £5,280 for Unique. She did an incredible job putting on an event filled with games, laughs and amazing prizes, take a look at all the smiling faces at the event!
We want to both thank her and wish her the best of luck in the Miss GB competition!
Who wants to take on a Kiltwalk in one of the great Scottish cities?
Check your calendars, choose your event and sign up today 👣
- Glasgow, 25th and 26th April
- Aberdeen, 7th June
- Dundee, 16th August
- Edinburgh, 13th September
Hopefully see you there: https://www.thekiltwalk.co.uk/events/
We now include links to Project 8p in all related guides!
Project 8p Foundation is dedicated to researching chromosome 8p disorders to uncover treatment, improve care, and provide meaningful answers families.
Learn about Project 8p here: https://project8p.org/
📅 Save the date for #RareChromoDay 2026: Thursday 25th June 2026
What will you do to help raise awareness this year? Get your child's school involved, wear bright colours to celebrate our community or host a fundraiser to help us reach more families around the world.
We’re working on a new members pack and want to include experiences of how our members have connected with others through Unique. If you've connected with other members we'd love to hear from you.
You’re welcome to remain anonymous. Email emily@rarechromo.org to be included. 👨👩👧👦
Over Christmas, Bertille won £1,000 for Unique by smashing the Webmart Christmas game!
Thanks for taking on the challenge and helping us support more families. And thanks to Webmart for the fun challenge each year!
Meet Caroline, born on 27th December 2024 in #NorthCarolina.
Caroline was diagnosed with 1q2.1 deletion syndrome. She has low muscle tone, a heart defect, feeding problems, and gastrointestinal problems. The family are thankful for everyone involved in her care. Read Caroline's story below👇
Our very own Niamh is running the Lake Garda Marathon for families affected by rare chromosome and gene disorders. Help Niamh reach her target and give her a boost! 🏃➡️
👉 https://ow.ly/c3wM50YBQLR
We can't wait to celebrate with a tea and biscuit in the office! 🍵🍪
Final day to apply for our Community Contacts Coordinator role.
If you're interested in joining our small tea, to help us connect more families affected by rare chromosome and gene disorder, this role might be for you. Apply now: https://ow.ly/f8j250Yr6br
#hiring
It's #PurpleDay. Help us spread awareness of epilepsy by telling your 'if I Can, You Can' story to help more people understand what living with epilepsy really means.
If you're sharing your story today, don't forget to tag us in your posts
🥳🎈 Our Facebook group for our wonderful Unique members in New Zealand turned 14!
Happy birthday to the group, and a huge thank you to Michelle, our local contact for New Zealand who does an absolutely fantastic job supporting our members across the country.
One week to go to apply for our Community Contacts Coordinator role.
If you're interested, or know some who is, send your cv and cover letter to louise@rarechromo.org by Apply by 31st March. Learn more on Charity Jobs: https://ow.ly/f8j250Yr6br
Researchers are inviting individuals with a #SCN1B genetic variant to take part in a short online survey to learn more about the experiences of people with SCN1B.
Want to help? Complete the 10‑minute survey: https://redcap.link/ftykr35s
#EpilepsyResearch #RareDisease #Genetics
We're looking for a Community Contacts Coordinator to join our team. Could you help develop Unique’s volunteer strategy and build a strong sense of community through meet-ups and workshops?
Apply by 31st March: https://ow.ly/f8j250Yr6br
A double thank you to McLarens and LBIA.
Recently we were selected to be the chosen charity at the LBIA dinner which raised over £7,000 for Unique. Today McLarens team came to our office to help put together our conference packs ready for our event on Saturday. THANK YOU!
We have a fantastic team of fundraisers at Thomas and Thomas Surveyors taking on the 3 Peaks Challenge next month.
They're supporting Unique as "I have seen first-hand the excellent work they do supporting families when they need it the most."
- Jonny (Director)
https://ow.ly/bvgG50Yp3Ra
Not long until An introduction to blended diet for tube feeding with Wilbo's Blends
On Tuesday 24th March 2026 at 1:00pm (UK time), Gareth Birkett, will share his expertise on the topic. Please register if you'd like access to the recording after the event - matt@rarechromo.org
Our collaboration with Tilly’s Tubes is LIVE!
We have created four different designs of #TubieTape and #TubiePads with our brand and we couldn't be more excited. 30% of every sale of our Unique branded designs comes to Unique.
Take a look: tillystubes.co.uk/collections/unique-tilly...
We are hiring: Community Contacts Coordinator
Our new Community Contacts Coordinator will lead on supporting volunteers from the Unique membership and help plan and run a programme of events tailored to the needs of our members.
Could this be you? Apply by 31st March: https://ow.ly/f8j250Yr6br
Unique supports and informs families affected by rare chromosome and gene disorders and the professionals working with them.
If you are affected by a rare chromosome or gene disorder you can join our membership for free: https://rarechromo.org/join-us/
Whole-genome sequencing is currently needed to diagnose #renusyndrome, creating significant access issues for families seeking answers. We are committed to reducing barriers and improving equity for those on the #diagnosticodyssey.
#renuhope
This #RareDiseaseDay we’re highlighting how data sharing supports diagnosis, research & families living with rare conditions.
Watch to find out how access to rare disease data can help families better understand their children’s conditions.
@uniquecharity.bsky.social @geneticallianceuk.bsky.social
Throwback Thursday to our family day in #Glasgow!
We are SO excited for our (sold out) conference this month - looking back at some of our previous event photos makes that excitement grow.
Who was at out Glasgow event last year? And where would you like to see us next?
Parker J is a jewelry business inspired by founder Rachel's son Jaxon, who was born with a rare genetic disorder. Jaxon’s resilience and individuality embody the heart of Parker J, influencing every piece they create.
Take a look here: parkerj-jewelry.com/...
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A HUGE thank you to Parker J Permanent Jewelry & Charm Bar, who donated a portion of their jewelry sales to Unique, raising a whopping $2,500 to help us support families affected by rare chromosome and gene disorders around the world.
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