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Understanding Rare Chromosome and Gene Disorders
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help@rarechromo.org
Helpline:
+44 (0) 1883 723356

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+44 (0) 1883 723306

Address:
The Stables, Station Road West
Oxted
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Unique @unique_charity ·
4h

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: https://rarechromo.org/media/singlegeneinfo/Single%20Gene%20Disorder%20Guides/Floating-Harbor%20syndrome%20FTNW.pdf

4

Unique @unique_charity ·
25 May

ONE MONTH UNTIL RARE CHROMO DAY 2026. We're raising £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: https://rarechromo.org/rare-chromo-day-2026/

4

Unique @unique_charity ·
23 May

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 £1,500, smashing their original target. Support them here: https://www.justgiving.com/page/lucy-jimbo

3

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Site editor Sarah Wynn PhD
Rare Chromosome Disorder Support Group. Registered charity no. 1110661
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Clinical photography provided by St George's University Hospital
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