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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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Your Support Counts Now More Than Ever!


A donation to Unique in these times of uncertainty will help us to continue to provide information and support to families affected by rare chromosome and gene disorders. Please help us to be there for all those who need our help....

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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 142 results. Page 1 of 1

Country County No. of Members
England -none- 43
England Avon 128
England Bath & NE Somerset 12
England Bedfordshire 139
England Berkshire 129
England Buckinghamshire 125
England Cambridgeshire 204
England Cheshire 230
England Cleveland 67
England Cornwall 113
England County Durham 118
England Cumbria 77
England Derbyshire 153
England Devon 193
England Dorset 110
England East Riding of Yorkshire 28
England East Sussex 219
England East Yorkshire 58
England Essex 371
England Gloucestershire 101
England Greater Manchester 262
England Hampshire 367
England Herefordshire 24
England Hertfordshire 228
England Humberside 17
England Isle of Man 7
England Isle of Wight 22
England Kent 433
England Lancashire 339
England Leicestershire 129
England Lincolnshire 168
England London 511
England Merseyside 156
England Middlesex 138
England NE Lincolnshire 14
England Norfolk 169
England North Lincolnshire 9
England North Somerset 25
England North Yorkshire 132
England Northamptonshire 137
England Northumberland 43
England Nottinghamshire 199
England Oxfordshire 109
England Rutland 4
England Shropshire 67
England Somerset 130
England South Gloucestershire 26
England South Yorkshire 249
England Staffordshire 161
England Suffolk 152
England Surrey 358
England Sussex 1
England Tyne & Wear 160
England Warwickshire 103
England West Midlands 312
England West Sussex 165
England West Yorkshire 336
England Wiltshire 135
England Wirral 4
England Worcestershire 66
England Yorkshire 4
Northern Ireland -none- 5
Northern Ireland Co. Antrim 106
Northern Ireland Co. Armagh 36
Northern Ireland Co. Derry 10
Northern Ireland Co. Down 71
Northern Ireland Co. Fermanagh 12
Northern Ireland Co. Londonderry 24
Northern Ireland Co. Tyrone 24
Northern Ireland County Down 1
Scotland -none- 9
Scotland Aberdeenshire 51
Scotland Angus 17
Scotland Argyll 5
Scotland Argyll & Bute 12
Scotland Arran 1
Scotland Ayrshire 27
Scotland Berwickshire 2
Scotland Caithness 3
Scotland Central 10
Scotland Clackmannanshire 3
Scotland Dumfries & Galloway 16
Scotland Dumfrieshire 6
Scotland Dunbartonshire 10
Scotland East Ayrshire 4
Scotland East Dunbartonshire 5
Scotland East Lothian 18
Scotland East Renfrewshire 1
Scotland Fife 53
Scotland Grampian 6
Scotland Highland 14
Scotland Inverclyde 2
Scotland Isle of Bute 1
Scotland Isle of Lewis 2
Scotland Isle of Skye 1
Scotland Kirkcudbrightshire 1
Scotland Lanarkshire 28
Scotland Lothian 22
Scotland Midlothian 33
Scotland Moray 4
Scotland North Ayrshire 4
Scotland North Lanarkshire 32
Scotland Orkney 1
Scotland Perthshire 7
Scotland Renfrewshire 27
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 3
Scotland South Lanarkshire 15
Scotland Stirlingshire 38
Scotland Strathclyde 84
Scotland Sutherland 1
Scotland Tayside 1
Scotland West Dunbartonshire 2
Scotland West Lothian 29
Scotland Wigtownshire 1
Wales -none- 5
Wales Anglesey 10
Wales Cardiff 1
Wales Carmarthenshire 22
Wales Ceredigion 11
Wales Clwyd 15
Wales Conwy 11
Wales Denbighshire 16
Wales Dyfed 2
Wales Flintshire 11
Wales Glamorgan 9
Wales Gwent 43
Wales Gwynedd 18
Wales Mid Glamorgan 28
Wales Monmouthshire 17
Wales Pembrokeshire 23
Wales Powys 14
Wales Rhondda Cynon Taff 12
Wales Rhondda Valley 1
Wales South Glamorgan 42
Wales Vale of Glamorgan 16
Wales West Glamorgan 33

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 116 results. Page 1 of 1

Country No. of Members
Albania 3
Alderney 1
Argentina 73
Aruba 1
Australia 1456
Austria 28
Bahrain 1
Belarus 5
Belgium 64
Bermuda 3
Bosnia and Herzegovina 8
Brazil 141
Brunei Darussalam 1
Bulgaria 9
Cambodia 1
Canada 900
Canary Islands 6
Chile 29
China 23
Colombia 33
Costa Rica 1
Croatia 15
Cuba 1
Curacao 1
Cyprus 12
Czech Republic 17
Denmark 74
Dominican Republic 5
Ecuador 4
Egypt 5
Eire 535
El Salvador 1
Estonia 6
Faroe Islands 1
Fiji 1
Finland 78
France 173
Georgia 4
Germany 258
Ghana 1
Gibraltar 7
Greece 21
Guatemala 7
Guernsey 11
Hong Kong 26
Hungary 8
Iceland 17
India 37
Indonesia 10
Iran 6
Iraq 1
Israel 43
Italy 159
Japan 14
Jersey 10
Jordan 4
Kazakhstan 1
Kenya 2
Kuwait 3
Latvia 5
Lebanon 4
Lithuania 2
Luxembourg 5
Macedonia 2
Malaysia 19
Malta 12
Mexico 38
Moldova 2
Monaco 1
Montenegro 1
Morocco 9
Namibia 1
Netherlands 4
New Zealand 353
Nigeria 2
North Macedonia 1
Norway 144
Oman 5
Pakistan 5
Peru 6
Philippines 12
Poland 99
Portugal 40
Puerto Rico 8
Qatar 6
Republic of Panama 4
Romania 34
Russia 107
Saudi Arabia 13
Senegal 1
Serbia 5
Singapore 18
Slovakia 10
Slovenia 14
South Africa 125
South Korea 9
Spain 168
Sri Lanka 5
Sudan 1
Sweden 127
Switzerland 63
Syria 1
Taiwan 8
Thailand 9
The Netherlands 280
Trinidad & Tobago 3
Turkey 34
U.S.A 1
U.S.A. 8314
Ukraine 14
United Arab Emirates 29
United Kingdom 10659
Uruguay 5
Venezuela 7
Vietnam 2
Zimbabwe 2
Download the Little Yellow Book
Our guide to rare chromosome disorders