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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 149 results. Page 1 of 1

Country County No. of Members
England -none- 41
England Avon 126
England Bath & NE Somerset 12
England Bedfordshire 137
England Belfast 1
England Berkshire 128
England Bristol 1
England Buckinghamshire 123
England Cambridgeshire 204
England Cheshire 229
England Cleveland 67
England Cornwall 110
England County Durham 118
England County Kildare 1
England Cumbria 77
England Derbyshire 151
England Devon 192
England Dorset 110
England East Riding of Yorkshire 27
England East Sussex 220
England East Yorkshire 58
England Essex 368
England Gloucestershire 100
England Greater London 1
England Greater Manchester 259
England Gwent 1
England Hampshire 364
England Herefordshire 24
England Hertfordshire 223
England Humberside 18
England Isle of Man 7
England Isle of Wight 22
England Kent 428
England Lancashire 336
England Leicestershire 127
England Lincolnshire 170
England London 506
England Merseyside 152
England Middlesex 138
England NE Lincolnshire 14
England Norfolk 170
England North Lanarkshire 1
England North Lincolnshire 9
England North Somerset 25
England North Yorkshire 131
England Northamptonshire 136
England Northumberland 43
England Nottinghamshire 198
England Oxfordshire 109
England Rutland 4
England Shropshire 67
England Somerset 130
England South Gloucestershire 26
England South Lanarkshire 1
England South Yorkshire 248
England Staffordshire 160
England Suffolk 150
England Surrey 356
England Tyne & Wear 158
England Tyne and Wear 1
England Warwickshire 103
England West Midlands 311
England West Sussex 164
England West Yorkshire 336
England Wiltshire 134
England Wirral 4
England Worcestershire 63
England Yorkshire 2
Northern Ireland -none- 4
Northern Ireland Co. Antrim 103
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 50
Scotland Angus 17
Scotland Argyll 5
Scotland Argyll & Bute 11
Scotland Argyll and Bute 1
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 52
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 27
Scotland Lothian 22
Scotland Midlothian 32
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 14
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- 4
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 8
Wales Gwent 42
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 43
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
View

Found 116 results. Page 1 of 1

Country No. of Members
Albania 3
Alderney 1
Argentina 72
Aruba 1
Australia 1445
Austria 28
Bahrain 1
Belarus 5
Belgium 61
Bermuda 3
Bosnia and Herzegovina 8
Brazil 139
Brunei Darussalam 1
Bulgaria 9
Cambodia 1
Canada 893
Canary Islands 6
Chile 29
China 23
Colombia 32
Costa Rica 1
Croatia 14
Cuba 1
Curacao 1
Cyprus 12
Czech Republic 16
Denmark 74
Dominican Republic 4
Ecuador 4
Egypt 5
Eire 531
El Salvador 1
Estonia 6
Faroe Islands 1
Fiji 1
Finland 78
France 169
Georgia 4
Germany 256
Ghana 1
Gibraltar 7
Greece 20
Guatemala 7
Guernsey 11
Hong Kong 26
Hungary 8
Iceland 17
India 36
Indonesia 10
Iran 6
Iraq 1
Israel 42
Italy 158
Japan 13
Jersey 10
Jordan 4
Kazakhstan 1
Kenya 2
Kuwait 3
Latvia 5
Lebanon 3
Lithuania 2
Luxembourg 5
Macedonia 2
Malaysia 19
Malta 12
Mexico 35
Moldova 2
Monaco 1
Montenegro 1
Morocco 9
Namibia 1
Netherlands 4
New Zealand 351
Nigeria 2
North Macedonia 1
Norway 146
Oman 5
Pakistan 5
Peru 6
Philippines 12
Poland 95
Portugal 40
Puerto Rico 8
Qatar 6
Republic of Panama 4
Romania 27
Russia 106
Saudi Arabia 13
Senegal 1
Serbia 5
Singapore 18
Slovakia 9
Slovenia 14
South Africa 124
South Korea 9
Spain 167
Sri Lanka 5
Sudan 1
Sweden 126
Switzerland 64
Syria 1
Taiwan 8
Thailand 9
The Netherlands 276
Trinidad & Tobago 3
Turkey 31
U.S.A. 8246
UAE 1
Ukraine 13
United Arab Emirates 28
United Kingdom 10575
Uruguay 5
Venezuela 7
Vietnam 2
Zimbabwe 2
Download the Little Yellow Book
Our guide to rare chromosome disorders