help@rarechromo.org
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

BECOME A MEMBER

What is an Array CGH?


Please click the button below to learn about Array CGH. The first of a series of Jargon Busting videos from Unique!

What is an Array CGH?

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.

Donate

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.

 

In 2026 we held a conference for our members, held in Birmingham UK. We had key speakers on a variety of important topics for our members. Each session was recorded so no matter where you are, you can benefit from the information that was shared. You can find the recordings on this page.

Research opportunities

If you’re looking to get involved in research, there are projects that take place around the world. We support many researchers by publicising these opportunities to our members and wider community.

You can learn about what projects we are currently promoting here

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 158 results. Page 1 of 1

Country County No. of Members
England -none- 106
England AL 1
England Avon 148
England Bath & NE Somerset 14
England Bedfordshire 178
England Berkshire 160
England Buckinghamshire 172
England Cambridge 1
England Cambridgeshire 277
England Cheshire 313
England Cleveland 72
England Cornwall 144
England County Durham 158
England Cumbria 99
England Derbyshire 208
England Devon 278
England Dorset 167
England East Riding of Yorkshire 38
England East Sussex 260
England East Yorkshire 72
England Essex 508
England Gloucestershire 152
England Greater Manchester 377
England Hampshire 512
England Herefordshire 39
England Hertfordshire 305
England Humberside 18
England IA 50322 1
England Isle of Man 11
England Isle of Wight 29
England Kent 549
England Lancashire 505
England Leicestershire 182
England Lincolnshire 234
England Llincolnshire 1
England London 684
England Merseyside 244
England Middlesex 152
England MS 1
England NE Lincolnshire 21
England NM 88012 1
England Norfolk 241
England North Lincolnshire 18
England North Somerset 38
England North Yorkshire 184
England Northamptonshire 171
England Northumberland 60
England Nottinghamshire 279
England NSW 1
England NY 1
England OH 4487 1
England Oxfordshire 159
England Perthshire 1
England Rutland 5
England Shropshire 93
England Somerset 188
England South Gloucestershire 31
England South Yorkshire 338
England Staffordshire 210
England Stockport 1
England Suffolk 199
England Surrey 451
England TX 76655 1
England Tyne & Wear 217
England Warwickshire 154
England West Midlands 456
England West Sussex 242
England West Yorkshire 457
England Wiltshire 176
England Worcestershire 108
England Wythenshawe 1
England Yorkshire 19
Northern Ireland -none- 14
Northern Ireland Antrim 1
Northern Ireland Co. Antrim 154
Northern Ireland Co. Armagh 49
Northern Ireland Co. Cavan 1
Northern Ireland Co. Cork 2
Northern Ireland Co. Derry 28
Northern Ireland Co. Down 103
Northern Ireland Co. Fermanagh 12
Northern Ireland Co. Londonderry 30
Northern Ireland Co. Tyrone 34
Northern Ireland County Armagh 1
Scotland Aberdeenshire 78
Scotland Angus 23
Scotland Argyll 6
Scotland Argyll & Bute 17
Scotland Arran 1
Scotland Ayrshire 36
Scotland Berwickshire 2
Scotland Caithness 4
Scotland Central 10
Scotland Clackmannanshire 4
Scotland Dumfries & Galloway 20
Scotland Dumfrieshire 8
Scotland Dunbartonshire 11
Scotland East Ayrshire 11
Scotland East Dunbartonshire 12
Scotland East Lothian 24
Scotland Fife 69
Scotland Grampian 4
Scotland Highland 18
Scotland Inverclyde 7
Scotland Invernesshire 5
Scotland Isle of Bute 1
Scotland Isle of Lewis 3
Scotland Isle of Skye 2
Scotland Kincardineshire 1
Scotland Kirkcudbrightshire 1
Scotland Lanarkshire 62
Scotland Lothian 26
Scotland Midlothian 53
Scotland Moray 7
Scotland North Ayrshire 11
Scotland North Lanarkshire 52
Scotland Orkney 4
Scotland Outer Hebrides 3
Scotland Perth & Kinross 4
Scotland Perthshire 13
Scotland Renfrewshire 41
Scotland Ross-shire 13
Scotland Roxburghshire 7
Scotland Scottish Borders 13
Scotland Selkirkshire 5
Scotland Shetland 8
Scotland South Ayrshire 6
Scotland South Lanarkshire 27
Scotland Stirlingshire 48
Scotland Strathclyde 86
Scotland Sutherland 1
Scotland Tayside 1
Scotland West Dumbartonshire 1
Scotland West Dunbartonshire 4
Scotland West Lothian 46
Scotland Wigtownshire 1
Wales Anglesey 17
Wales Caerphilly 5
Wales Carmarthenshire 34
Wales Ceredigion 14
Wales Clwyd 14
Wales Conwy 15
Wales Denbighshire 23
Wales Dyfed 4
Wales Flintshire 20
Wales Glamorgan 32
Wales Gwent 63
Wales Gwynedd 24
Wales Mid Glamorgan 36
Wales Monmouthshire 28
Wales Neath Port Talbot 2
Wales Pembrokeshire 24
Wales Powys 20
Wales Rhondda Cynon Taff 17
Wales South Glamorgan 44
Wales Torfaen 3
Wales Vale of Glamorgan 26
Wales West Glamorgan 43

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 138 results. Page 1 of 1

Country No. of Members
Albania 3
Algeria 4
Argentina 108
Armenia 1
Aruba 1
Australia 1906
Austria 41
Azerbaijan 2
Bahrain 1
Bangladesh 2
Belarus 13
Belgium 93
Bermuda 3
Bosnia and Herzegovina 14
Botswana 1
Brazil 286
Brunei Darussalam 1
Bulgaria 18
Cambodia 1
Canada 1196
Canary Islands 6
Cayman Islands 1
Chile 56
China 38
Colombia 75
Costa Rica 3
Croatia 37
Cuba 3
Curacao 1
Cyprus 19
Czech Republic 36
Denmark 108
Dominican Republic 6
Ecuador 13
Egypt 15
Eire 687
El Salvador 1
Estonia 8
Faroe Islands 2
Fiji 1
Finland 91
France 248
Georgia 7
Germany 406
Ghana 1
Gibraltar 10
Greece 36
Guam 1
Guatemala 14
Guernsey 16
Hong Kong 28
Hungary 11
Iceland 19
India 88
Indonesia 14
Iran 12
Iraq 2
Israel 72
Italy 256
Japan 30
Jersey 15
Jordan 8
Kazakhstan 6
Kenya 4
Kosovo 1
Kuwait 7
Latvia 7
Lebanon 7
Leicester 1
Lithuania 6
Luxembourg 7
Macedonia 3
Malawi 1
Malaysia 31
Maldives 2
Malta 17
Mexico 73
Moldova 5
Montenegro 2
Morocco 14
Namibia 1
Nepal 1
New Caledonia 1
New Zealand 505
Nicaragua 1
Nigeria 4
North Macedonia 4
Norway 185
Oman 6
Pakistan 13
Palestine 3
Peru 15
Philippines 20
Poland 231
Portugal 60
Puerto Rico 10
Qatar 10
Republic of Panama 4
Romania 73
Russia 203
Saudi Arabia 24
Senegal 1
Serbia 10
Singapore 30
Slovakia 20
Slovenia 21
Somalia 1
South Africa 174
South Korea 13
Spain 269
Sri Lanka 8
Sudan 1
Suriname 1
Swaziland 1
Sweden 167
Switzerland 98
Syria 1
Taiwan 12
Tebessa 1
Thailand 15
The Bahamas 1
The Netherlands 372
Trinidad & Tobago 5
Tunisia 6
Turkey 74
U.S.A 1
U.S.A. 11020
U.S.S. 1
Uganda 1
Ukraine 37
United Arab Emirates 36
United Kingdom 14654
Uruguay 9
US 1
Uzbekistan 5
Venezuela 10
Vietnam 6
Zimbabwe 2