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- 51
England Avon 133
England Bath & NE Somerset 12
England Bedfordshire 142
England Berkshire 134
England Buckinghamshire 135
England Cambridgeshire 215
England Cheshire 242
England Cleveland 67
England Cornwall 113
England County Durham 123
England Cumbria 80
England Derbyshire 156
England Devon 205
England Dorset 116
England East Riding of Yorkshire 27
England East Sussex 222
England East Yorkshire 59
England Essex 393
England Gloucestershire 110
England Greater Manchester 279
England Hampshire 380
England Herefordshire 26
England Hertfordshire 241
England Humberside 17
England Isle of Man 8
England Isle of Wight 22
England Italy 1
England Kent 455
England Lancashire 366
England Leicestershire 137
England Lincolnshire 177
England London 528
England Merseyside 171
England Middlesex 138
England NE Lincolnshire 16
England NM 88012 1
England Norfolk 178
England North Lincolnshire 9
England North Somerset 29
England North Yorkshire 136
England Northamptonshire 141
England Northumberland 46
England Nottinghamshire 214
England Oxfordshire 119
England Rutland 4
England Shropshire 69
England Somerset 138
England South Gloucestershire 26
England South Yorkshire 258
England Staffordshire 174
England Suffolk 160
England Surrey 363
England Tyne & Wear 164
England Warwickshire 112
England West Midlands 338
England West Sussex 172
England West Yorkshire 359
England Wiltshire 137
England Wirral 4
England Worcestershire 74
England Yorkshire 5
Northern Ireland -none- 5
Northern Ireland Co. Antrim 114
Northern Ireland Co. Armagh 34
Northern Ireland Co. Derry 13
Northern Ireland Co. Down 78
Northern Ireland Co. Fermanagh 12
Northern Ireland Co. Londonderry 24
Northern Ireland Co. Tyrone 24
Scotland -none- 11
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 3
Scotland Dumfries & Galloway 18
Scotland Dumfrieshire 6
Scotland Dunbartonshire 10
Scotland East Ayrshire 5
Scotland East Dunbartonshire 7
Scotland East Lothian 18
Scotland Fife 52
Scotland Grampian 6
Scotland Highland 13
Scotland Inverclyde 2
Scotland Invernessshire 1
Scotland Isle of Bute 1
Scotland Isle of Lewis 3
Scotland Isle of Skye 1
Scotland Kirkcudbrightshire 1
Scotland Lanarkshire 33
Scotland Lothian 24
Scotland Midlothian 33
Scotland Moray 5
Scotland North Ayrshire 6
Scotland North Lanarkshire 36
Scotland Orkney 1
Scotland Outer Hebrides 1
Scotland Perthshire 7
Scotland Renfrewshire 29
Scotland Ross and Cromarty 1
Scotland Ross-shire 10
Scotland Roxburghshire 8
Scotland Scottish Borders 10
Scotland Selkirkshire 4
Scotland Shetland 7
Scotland South Ayrshire 5
Scotland South Lanarkshire 18
Scotland Stirlingshire 39
Scotland Strathclyde 86
Scotland Sutherland 1
Scotland Tayside 1
Scotland West Dunbartonshire 2
Scotland West Lothian 30
Scotland Wigtownshire 1
Wales -none- 6
Wales Anglesey 13
Wales Carmarthenshire 24
Wales Ceredigion 10
Wales Clwyd 15
Wales Conwy 11
Wales Denbighshire 18
Wales Dyfed 2
Wales Flintshire 13
Wales Glamorgan 15
Wales Gwent 45
Wales Gwynedd 19
Wales Mid Glamorgan 30
Wales Monmouthshire 20
Wales Pembrokeshire 23
Wales Powys 16
Wales Rhondda Cynon Taff 13
Wales South Glamorgan 41
Wales Vale of Glamorgan 17
Wales West Glamorgan 31

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 118 results. Page 1 of 1

Country No. of Members
Albania 3
Alderney 1
Argentina 77
Aruba 1
Australia 1530
Austria 29
Bahrain 1
Belarus 6
Belgium 67
Bermuda 3
Bosnia and Herzegovina 8
Brazil 163
Brunei Darussalam 1
Bulgaria 10
Cambodia 1
Canada 948
Canary Islands 6
Chile 30
China 25
Colombia 38
Costa Rica 1
Croatia 18
Cuba 1
Curacao 1
Cyprus 12
Czech Republic 20
Denmark 81
Dominican Republic 5
Ecuador 5
Egypt 7
Eire 562
El Salvador 1
Estonia 8
Faroe Islands 1
Fiji 1
Finland 81
France 182
Georgia 4
Germany 280
Ghana 1
Gibraltar 7
Greece 21
Guam 1
Guatemala 10
Guernsey 12
Hong Kong 25
Hungary 8
Iceland 18
India 46
Indonesia 11
Iran 7
Iraq 1
Israel 48
Italy 171
Japan 16
Jersey 10
Jordan 4
Kazakhstan 1
Kenya 2
Kuwait 3
Latvia 5
Lebanon 4
Lithuania 2
Luxembourg 6
Macedonia 2
Malaysia 19
Maldives 1
Malta 13
Mexico 45
Moldova 2
Montenegro 1
Morocco 9
Namibia 1
Netherlands 4
New Zealand 378
Nigeria 3
North Macedonia 3
Norway 149
Oman 5
Pakistan 5
Peru 6
Philippines 13
Poland 116
Portugal 45
Puerto Rico 9
Qatar 6
Republic of Panama 4
Romania 45
Russia 114
Saudi Arabia 14
Senegal 1
Serbia 6
Singapore 20
Slovakia 11
Slovenia 14
South Africa 136
South Korea 10
Spain 178
Sri Lanka 5
Sudan 1
Sweden 133
Switzerland 68
Syria 1
Taiwan 8
Thailand 10
The Netherlands 288
Trinidad & Tobago 3
Turkey 39
U.S.A. 8802
Uganda 1
Ukraine 14
United Arab Emirates 30
United Kingdom 11288
Uruguay 6
Uzbekistan 1
Venezuela 8
Vietnam 3
Zimbabwe 2
Download the Little Yellow Book
Our guide to rare chromosome disorders