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 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 140 results. Page 1 of 1

Country County No. of Members
England -none- 39
England Avon 126
England Bath & NE Somerset 12
England Bedfordshire 136
England Berkshire 124
England Buckinghamshire 121
England Cambridgeshire 200
England Cheshire 224
England Cleveland 66
England Cornwall 110
England County Durham 115
England Cumbria 77
England Derbyshire 148
England Devon 190
England Dorset 106
England East Riding of Yorkshire 26
England East Sussex 217
England East Yorkshire 59
England Essex 366
England Gloucestershire 98
England Greater Manchester 257
England Hampshire 361
England Herefordshire 23
England Hertfordshire 221
England Humberside 19
England Isle of Man 7
England Isle of Wight 23
England Kent 421
England Lancashire 328
England Leicestershire 126
England Lincolnshire 162
England London 496
England Merseyside 148
England Middlesex 136
England NE Lincolnshire 14
England Norfolk 164
England North Devon 1
England North Lincolnshire 9
England North Somerset 25
England North Yorkshire 127
England Northamptonshire 131
England Northumberland 42
England Nottinghamshire 194
England Oxfordshire Oxfordshire 1
England Oxfordshire 107
England Rutland 4
England Shropshire 66
England Somerset 125
England South Gloucestershire 24
England South Yorkshire 240
England Staffordshire 157
England Suffolk 147
England Surrey 351
England Tyne & Wear 157
England Warwickshire 100
England West Midlands 305
England West Sussex 164
England West Yorkshire 328
England Wiltshire 133
England Wirral 4
England Worcestershire 60
Northern Ireland -none- 4
Northern Ireland Co. Antrim 100
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
Scotland -none- 10
Scotland Aberdeenshire 49
Scotland Angus 17
Scotland Argyll 5
Scotland Argyll & Bute 11
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 8
Scotland East Ayrshire 4
Scotland East Dunbartonshire 5
Scotland East Lothian 18
Scotland East Renfrewshire 1
Scotland Fife 50
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 26
Scotland Lothian 22
Scotland Midlothian 30
Scotland Moray 4
Scotland North Ayrshire 4
Scotland North Lanarkshire 31
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 13
Scotland Stirlingshire 37
Scotland Strathclyde 83
Scotland Sutherland 1
Scotland Tayside 1
Scotland West Dunbartonshire 2
Scotland West Lothian 28
Scotland Wigtownshire 1
Wales -none- 4
Wales Anglesey 10
Wales Carmarthenshire 22
Wales Ceredigion 11
Wales Clwyd 15
Wales Conwy 11
Wales Denbighshire 16
Wales Dyfed 2
Wales Flintshire 11
Wales Glamorgan 7
Wales Gwent 42
Wales Gwynedd 18
Wales Mid Glamorgan 30
Wales Monmouthshire 16
Wales Pembrokeshire 23
Wales Powys 14
Wales Rhondda Cynon Taff 11
Wales Rhondda Valley 1
Wales South Glamorgan 44
Wales Vale of Glamorgan 15
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 114 results. Page 1 of 1

Country No. of Members
Albania 2
Alderney 1
Argentina 67
Aruba 1
Australia 1417
Austria 28
Bahrain 1
Belarus 5
Belgium 60
Bermuda 3
Bosnia and Herzegovina 8
Brazil 134
Brunei Darussalam 1
Bulgaria 9
Cambodia 1
Canada 871
Canary Islands 6
Chile 29
China 23
Colombia 30
Costa Rica 1
Croatia 14
Cuba 1
Curacao 1
Cyprus 12
Czech Republic 16
Denmark 73
Dominican Republic 4
Ecuador 4
Egypt 5
Eire 523
El Salvador 1
Estonia 5
Faroe Islands 1
Fiji 1
Finland 76
France 166
Georgia 4
Germany 250
Ghana 1
Gibraltar 7
Greece 20
Guatemala 6
Guernsey 11
Hong Kong 26
Hungary 8
Iceland 17
India 35
Indonesia 10
Iran 6
Iraq 1
Israel 42
Italy 154
Japan 12
Jersey 10
Jordan 4
Kazakhstan 1
Kenya 2
Korea 1
Kuwait 3
Latvia 5
Lebanon 3
Lithuania 2
Luxembourg 5
Macedonia 2
Malaysia 18
Malta 12
Mexico 30
Moldova 2
Monaco 1
Montenegro 1
Morocco 8
Namibia 1
New Zealand 348
Nigeria 2
North Macedonia 1
Norway 146
Oman 5
Pakistan 5
Peru 6
Philippines 11
Poland 90
Portugal 40
Puerto Rico 8
Qatar 6
Republic of Panama 4
Romania 26
Russia 103
Saudi Arabia 13
Senegal 1
Serbia 5
Singapore 17
Slovakia 8
Slovenia 14
South Africa 121
South Korea 8
Spain 164
Sri Lanka 5
Sweden 124
Switzerland 61
Syria 1
Taiwan 8
Thailand 9
The Netherlands 275
Trinidad & Tobago 3
Turkey 30
U.S.A. 8098
Ukraine 13
United Arab Emirates 28
United Kingdom 10375
Uruguay 5
Venezuela 7
Vietnam 2
Zimbabwe 2
Download the Little Yellow Book
Our guide to rare chromosome disorders