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Understanding Rare Chromosome and Gene Disorders

Unique Families


With a global network of Families & Professionals, Unique can help you find out more about your child's or your own rare chromosome disorder, copy number variant or single gene disorder associated with learning disability and developmental delay. Click the button below to join us. We can answer many of your questions and match you with other families. You'll also be helping us understand the lifetime effects of these rare disorders. Alternatively, for queries, email info@rarechromo.org

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A caring voice in difficult times...


“Thanks so much for your time yesterday, it meant an awful lot to have a caring, informed voice on the end of the phone in these particularly difficult times.”

Please make a donation so we can help even more families like this, when they most need us, or scroll down for some fundraising ideas.

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Welcome to Unique

Discovering that you or your child has a rare chromosome disorder, copy number variant or single gene disorder causing your child's learning disability, developmental delay and maybe other symptoms can come as a great shock. You might be feeling a mixture of emotions; sadness, confusion, numbness, anger, guilt, "why me?", isolation, bewilderment and very often a sense of grief for the child you had anticipated. You might despair at the lack of information about your own or your child's disorder or that the disorder hasn't even got a 'proper' name. Whatever your feelings and emotions, we know how much it can help to talk to people who understand what you are going through and who even know what you are talking about.

How can we help?

You might want to learn more about your child's rare chromosome disorder, copy number variant or single gene disorder or find another child with the same disorder. We can try to help you with information and family links and matches. Even if your child's disorder is unique, just talking to other parents can help to alleviate feelings of isolation and "Why me?" Please click on the links above and below for more information and to learn how we can help. If you can't find a guide to your child's disorder we might still have members registered on our confidential database with a similar disorder.  Just ask us on info@rarechromo.org Please note that we do not cover mitochondrial or metabolic disorders.

Practical Guides and Packs for Members

We collect information to help families affected by rare chromosome disorders, copy number variants and single gene disorders associated with learning disability and developmental delay with practical daily living and have produced a series of information guides on a variety of topics from communication to grants and funding. Additional practical guides and updates to existing guides will be coming on stream all the time, as fundraising and donations allow, so please do pop back regularly to see what’s new.

UK Membership

We have members living across the UK.  Click on the link below to see how many members live in your county.

UK Membership
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Found 141 results. Page 1 of 1

Country County No. of Members
England -none- 48
England Avon 133
England Bath & NE Somerset 12
England Bedfordshire 137
England Berkshire 131
England Buckinghamshire 129
England Cambridgeshire 213
England Cheshire 236
England Cleveland 68
England Cornwall 113
England County Durham 123
England Cumbria 78
England Derbyshire 155
England Devon 197
England Dorset 112
England East Riding of Yorkshire 27
England East Sussex 221
England East Yorkshire 59
England Essex 385
England Gloucestershire 105
England Greater Manchester 274
England Hampshire 377
England Herefordshire 25
England Hertfordshire 237
England Humberside 17
England Isle of Man 8
England Isle of Wight 22
England Kent 446
England KY 42724 1
England Lancashire 355
England Leicestershire 132
England Lincolnshire 174
England London 520
England Merseyside 166
England Middlesex 140
England NE Lincolnshire 16
England NM 88012 1
England Norfolk 175
England North Lincolnshire 9
England North Somerset 28
England North Yorkshire 136
England Northamptonshire 138
England Northumberland 43
England Nottinghamshire 207
England Oxfordshire 114
England Rutland 4
England Shropshire 67
England Somerset 135
England South Gloucestershire 27
England South Yorkshire 256
England Staffordshire 169
England Suffolk 158
England Surrey 363
England Tyne & Wear 160
England Warwickshire 112
England West Midlands 329
England West Sussex 172
England West Yorkshire 348
England Wiltshire 137
England Wirral 4
England Worcestershire 74
England Yorkshire 4
Northern Ireland -none- 5
Northern Ireland Co. Antrim 113
Northern Ireland Co. Armagh 34
Northern Ireland Co. Derry 13
Northern Ireland Co. Down 74
Northern Ireland Co. Fermanagh 12
Northern Ireland Co. Londonderry 24
Northern Ireland Co. Tyrone 24
Scotland -none- 10
Scotland Aberdeenshire 54
Scotland Angus 18
Scotland Argyll 5
Scotland Argyll & Bute 12
Scotland Arran 1
Scotland Ayrshire 31
Scotland Berwickshire 2
Scotland Caithness 3
Scotland Central 10
Scotland Clackmannanshire 2
Scotland Dumfries & Galloway 18
Scotland Dumfrieshire 6
Scotland Dunbartonshire 10
Scotland East Ayrshire 4
Scotland East Dunbartonshire 6
Scotland East Lothian 18
Scotland Fife 52
Scotland Grampian 6
Scotland Highland 14
Scotland Inverclyde 2
Scotland Isle of Bute 1
Scotland Isle of Lewis 3
Scotland Isle of Skye 1
Scotland Kirkcudbrightshire 1
Scotland Lanarkshire 32
Scotland Lothian 24
Scotland Midlothian 34
Scotland Moray 4
Scotland North Ayrshire 6
Scotland North Lanarkshire 34
Scotland Orkney 1
Scotland Outer Hebrides 1
Scotland Perthshire 7
Scotland Renfrewshire 28
Scotland Ross and Cromarty 1
Scotland Ross-shire 10
Scotland Roxburghshire 8
Scotland Scottish Borders 10
Scotland Selkirkshire 5
Scotland Shetland 7
Scotland South Ayrshire 5
Scotland South Lanarkshire 16
Scotland Stirlingshire 38
Scotland Strathclyde 84
Scotland Sutherland 1
Scotland Tayside 1
Scotland West Dunbartonshire 2
Scotland West Lothian 30
Scotland Wigtownshire 1
Wales -none- 6
Wales Anglesey 12
Wales Carmarthenshire 23
Wales Ceredigion 10
Wales Clwyd 15
Wales Conwy 11
Wales Cumbria 1
Wales Denbighshire 18
Wales Dyfed 2
Wales Flintshire 12
Wales Glamorgan 15
Wales Gwent 44
Wales Gwynedd 18
Wales Mid Glamorgan 30
Wales Monmouthshire 20
Wales Pembrokeshire 23
Wales Powys 15
Wales Rhondda Cynon Taff 13
Wales South Glamorgan 41
Wales Vale of Glamorgan 16
Wales West Glamorgan 32

International Membership

We welcome families and individuals affected by rare chromosome and autosomal dominant single gene disorders to join our membership, no matter where in the world you live.  Click on the link below to see how many members we have living in your country.

International Membership
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Found 117 results. Page 1 of 1

Country No. of Members
Albania 3
Alderney 1
Argentina 75
Aruba 1
Australia 1506
Austria 29
Bahrain 1
Belarus 5
Belgium 66
Bermuda 3
Bosnia and Herzegovina 8
Brazil 157
Brunei Darussalam 1
Bulgaria 9
Cambodia 1
Canada 936
Canary Islands 6
Chile 29
China 24
Colombia 37
Costa Rica 1
Croatia 17
Cuba 1
Curacao 1
Cyprus 12
Czech Republic 18
Denmark 80
Dominican Republic 5
Ecuador 5
Egypt 6
Eire 552
El Salvador 1
Estonia 8
Faroe Islands 1
Fiji 1
Finland 79
France 179
Georgia 4
Germany 277
Ghana 1
Gibraltar 7
Greece 21
Guatemala 10
Guernsey 11
Hong Kong 25
Hungary 8
Iceland 18
India 43
Indonesia 11
Iran 7
Iraq 1
Israel 48
Italy 169
Japan 14
Jersey 10
Jordan 4
Kazakhstan 1
Kenya 2
Kuwait 3
Latvia 5
Lebanon 4
Lithuania 2
Luxembourg 5
Macedonia 2
Malaysia 19
Maldives 1
Malta 13
Mexico 42
Moldova 2
Montenegro 1
Morocco 9
Namibia 1
Netherlands 4
New Zealand 369
Nigeria 3
North Macedonia 2
Norway 146
Oman 5
Pakistan 5
Peru 6
Philippines 13
Poland 110
Portugal 43
Puerto Rico 8
Qatar 6
Republic of Panama 4
Romania 40
Russia 111
Saudi Arabia 14
Senegal 1
Serbia 6
Singapore 20
Slovakia 10
Slovenia 14
South Africa 132
South Korea 11
Spain 175
Sri Lanka 5
Sudan 1
Sweden 130
Switzerland 68
Syria 1
Taiwan 8
Thailand 10
The Netherlands 284
Trinidad & Tobago 3
Turkey 37
U.S.A. 8646
Uganda 1
Ukraine 14
United Arab Emirates 29
United Kingdom 11089
Uruguay 5
Uzbekistan 1
Venezuela 7
Vietnam 2
Zimbabwe 2
Download the Little Yellow Book
Our guide to rare chromosome disorders